Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Tracie, Curl up until you feel better, you’re in my thoughts and prayers. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, January 17, 2007 11:44 PM To: nsmods ; neurosarcoidosis Subject: Tracie update As most of you know, I've increased the dosage of my Remicade to 7mg/kg. This means I'm getting about 650mg dose (I think) and it's managed to give me a very bad case of the flu. So if I go MIA this week-- don't worry, I'll re-emerge as soon as I can. I've been trying to check the puter each day, and if I see that I can focus these eyes to read-- I'll be doing whatever. I do have Tamiflu that I keep on hand now, along with an antibiotic, so even though it seems viral- I'm already treating as if it's got the potential to knock me down. I'm determined to not allow that to happen, so am going to follow my own advice and curl up in a REAL blanket and become a vegetable--as long as it's not brocolli or cauliflower. Hmm, this eggplant thing is kind of scary. . . Love ya all, and behave yourself, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Oh Tracie, what a bummer! No flu shot? Our entire family has had to get them ever since I was diagnosed with an autoimmune disorder. I know there is some controversy over the flu shots but after getting influenza A and pneumonia several years ago, we faithfully stick out our arms. I don't know if I would have survived that episode if I was on Remicade and Imuran like I am now. By the way, how often do you get Remicade? My neighbor gets it for Ankylosing Spondilitis and when they stretched his dose to 8 weeks apart all of his symptoms came back (ugh). Take care of yourself. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 I did get my flu shot, so I had a "slight" case of the flu. Three days of being intimate with the toilet is 3 too many! As for the Remicade, I get my infusions at 4 wk intervals-- so every 28 days. I'm at a 7mg/kg dose now, and am hoping to see if this holds me over from day 23-28-- without the rebound lymph pain. My lymphs swell up and feel like marbles. Ouch! I can't get the guys to do the flu shots, yet. I figure once I end up hospitalized with something maybe one of the gurus can get them to listen. (I've thought about sticking them in their sleep. . ) With the Remicade, it is necessary to tweak the intervals and strength until you get what works for you. The down side is that the more often you get it-- the higher risk you are for developing other problems. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 ,Ankylosing Spondylitis is another bad autoimmune disorder. My husband was dx with it when he was 30. He does ok and is on Celebrex. At least there is a gene marker (B27) to identify a genetic predisposion. But it makes me stop and think about all these weird diseases out there!Blessings,Beckywendy_cidp wrote: Oh Tracie, what a bummer! No flu shot? Our entire family has had to get them ever since I was diagnosed with an autoimmune disorder. I know there is some controversy over the flu shots but after getting influenza A and pneumonia several years ago, we faithfully stick out our arms. I don't know if I would have survived that episode if I was on Remicade and Imuran like I am now. By the way, how often do you get Remicade? My neighbor gets it for Ankylosing Spondilitis and when they stretched his dose to 8 weeks apart all of his symptoms came back (ugh). Take care of yourself. - Access over 1 million songs - Yahoo! Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 I've not been arond much lately, and have been going thru some "burnout" myself. I do think it's related to my thyroid-- my hormones and energy level are zapped. It's made concentrating tough-- so I just hope I make sense when I'm answering your emails. I've been working on a "gratitude journal" so that I'm focused on some of the better aspects of my life. This is a suggestion I'd have for all of us. It's easy to get caught up in the challenges of illness, and forget to be aware of what is good. I am still kind of on hiatus, so Rose and Debbie and are holding down the fort-- so I know you are in good hands. Take care, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 Tracie, I got myself a "gratitude rock" and I rub it just like in the movie "The Secret" and I remember everything that is good and I am thankful for. I know I could be worse and thankful for the recovery I have made since December. At least I got my eyesight back even though damaged and I can see. It is better than not being able to see close at all with this eye. I also know that other people are far worse than I so I am thankful for what I have, what I have achieved and that I do have a few friends that really want to know how I am doing. I even trained my cat "Gracee" to kiss the rock and be thankful too. LOL KatSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Duhhhh, what do you mean? I don't get it. RonSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Duhhhh, what do you mean? I don't get it. RonSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
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