RE: Tracie Update

[Guest guest]

As I said before we just had a visit from my niece and her husband. I started to inttroduce her to someone and I sad, "This is my Sister- In- Law" She was so upset. She now thinks that I have Alzheimer's. Barb J. Marla wrote: Hey Tracie, You know we are all here for you; wish we lived closer so could really “be there†for you. Yes it’s very difficult living day to day, minute to minute, but really we have all been doing this, even you, and you’ve been doing a heck of a good job at

it! So hang in there. You’re in my prayers, and especially on the 27th I will be sending positive thoughts to you! Oh and it’s OK to be in a funk. Today I ran into some friends from church with my Mom, and I’ve known these people for like 15 years, taught bible class with her, and I could not for the life of me remember their names, so I just said, “this is my Mom, Marvel†and left it at that, I felt so stupid. She just picked it up with hi I’m Lori and this is my husband Vic. Man I just hate those times, but they happenJ oh well, I know I will be in trouble when I can’t remember my husband’s name? Wishing you the best that life has to offer you right now Tracie! Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...Sent: Wednesday, July 19, 2006 12:49 AMTo: nsmods ; neurosarcoidosis Subject: Tracie

Update Ok guys,We all know I'm in a funk. Two weeks ago when I got my Remicade infusion, I ended up with a wallbanger allergic reaction, and for 3 or 4 days, my throat was closing off. Benadryl managed to work this time.My next infusion is set for July 27 and I'm having to make a serious decision. If I get the infusion-- I will have to have all the premeds and the Benadryl. If I have another allergic reaction--then I will have to discontinue the Remicade. I've decided to roll the dice on the 27th, and get

the infusion-- with the hope that the other meds will keep me safe. I am frustrated, scared, angry becuase I know that my other choices are no where near as effective as the Remicade has been. I've been on Remicade for almost 2 yrs now, and I would hate to lose the progress I've made. For me, it has been excellant, but the more I take, the higher the dosage, and the more often you require it-- the higher the chance of side effects. It's going to be interesting, will be backpacking that week with a bunch of kids-- so there isn't anyone else that will be home. (Torey has moved out.) I am struggling with this decision, yet I know that I can't put it off for an extra 2 wks until 's back from his vacationing. My emotions are all whacked out-- I do believe it's from the reaction. I haven't been able to get the blood sugars back into control yet--so I'm working on that. This is where I have to go

day by day, minute by minute-- and I'm not good at that. Tracie

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