Re: remicade infusion today - another one bites the dust i...

[Guest guest]

Kim,

You need the Cytoxan. I doubt the Enbrel or Humira would help== I don't know if they have the same proteins as does Remicade.

I'm so sorry this is happening-- I cna't imagine what you going thru. I'll be keeping you in my prayers. Hang in there--

Love to you,

Tracie

[Guest guest]

Kim,

You need the Cytoxan. I doubt the Enbrel or Humira would help== I don't know if they have the same proteins as does Remicade.

I'm so sorry this is happening-- I cna't imagine what you going thru. I'll be keeping you in my prayers. Hang in there--

Love to you,

Tracie

[Guest guest]

Dear Tracie, I dont know why this happening either.... maybe im not listening closely enough. You know the Drs actually ... one or two of them actually told me yesterday how i should be so thankful that my disease isnt much worse than it is. Now how is that for kicking a person when they are down? I wasnt freaked out or antyhing, I was calm and dealing, but just disappointed that now I wouldnt be able to take the remicade. I know there are much worse diseases and things could be so much worse, i thank god and am in awareness of this always, and do remember it when i get angry of how things are going for me. but for a dr to say that after what just happened and when things are what they are for me, and make me feel guilty for being upset over it all...it wasnt very nice was it? but

it worked they made me feel guilty. i heard it thrown in there that they didnt need to treat the neurosarc disease itself, but treat the symptoms, the seizures...you know this old story. well....i will not say more on this lively conversation among them. couldnt they take it out of earshot? my dr wasnt anywhere around of course, still havent seen him. i did get my second eeg report and talked to that neuro at the other hospital. he said it shows epileptic activity in the left fronto-temporal lobe area. and he talked to me about it for while and said it would explain many of hte troubles im having. but he also said some theta waves or something

concerned him that they indicated possible brain injury in that area. it still showing epileptic activity with all this seizure meds? then yesterday hahahaha, in the confusion when i said what should i do with my siezure meds, the guy says well since your stable we will leave them the same?????????????? when were my seizures stable??? i said improved i think, never stable. and here i was talking about trying to improve the dr patient relationship. what a nut i am .... i give up. i dont know what to do. i dont honestly know what to do. but i am oddly calm and dont care. sorry for the complaining. take care kim

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Dear Tracie, I dont know why this happening either.... maybe im not listening closely enough. You know the Drs actually ... one or two of them actually told me yesterday how i should be so thankful that my disease isnt much worse than it is. Now how is that for kicking a person when they are down? I wasnt freaked out or antyhing, I was calm and dealing, but just disappointed that now I wouldnt be able to take the remicade. I know there are much worse diseases and things could be so much worse, i thank god and am in awareness of this always, and do remember it when i get angry of how things are going for me. but for a dr to say that after what just happened and when things are what they are for me, and make me feel guilty for being upset over it all...it wasnt very nice was it? but

it worked they made me feel guilty. i heard it thrown in there that they didnt need to treat the neurosarc disease itself, but treat the symptoms, the seizures...you know this old story. well....i will not say more on this lively conversation among them. couldnt they take it out of earshot? my dr wasnt anywhere around of course, still havent seen him. i did get my second eeg report and talked to that neuro at the other hospital. he said it shows epileptic activity in the left fronto-temporal lobe area. and he talked to me about it for while and said it would explain many of hte troubles im having. but he also said some theta waves or something

concerned him that they indicated possible brain injury in that area. it still showing epileptic activity with all this seizure meds? then yesterday hahahaha, in the confusion when i said what should i do with my siezure meds, the guy says well since your stable we will leave them the same?????????????? when were my seizures stable??? i said improved i think, never stable. and here i was talking about trying to improve the dr patient relationship. what a nut i am .... i give up. i dont know what to do. i dont honestly know what to do. but i am oddly calm and dont care. sorry for the complaining. take care kim

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Dear Tracie, I dont know why this happening either.... maybe im not listening closely enough. You know the Drs actually ... one or two of them actually told me yesterday how i should be so thankful that my disease isnt much worse than it is. Now how is that for kicking a person when they are down? I wasnt freaked out or antyhing, I was calm and dealing, but just disappointed that now I wouldnt be able to take the remicade. I know there are much worse diseases and things could be so much worse, i thank god and am in awareness of this always, and do remember it when i get angry of how things are going for me. but for a dr to say that after what just happened and when things are what they are for me, and make me feel guilty for being upset over it all...it wasnt very nice was it? but

it worked they made me feel guilty. i heard it thrown in there that they didnt need to treat the neurosarc disease itself, but treat the symptoms, the seizures...you know this old story. well....i will not say more on this lively conversation among them. couldnt they take it out of earshot? my dr wasnt anywhere around of course, still havent seen him. i did get my second eeg report and talked to that neuro at the other hospital. he said it shows epileptic activity in the left fronto-temporal lobe area. and he talked to me about it for while and said it would explain many of hte troubles im having. but he also said some theta waves or something

concerned him that they indicated possible brain injury in that area. it still showing epileptic activity with all this seizure meds? then yesterday hahahaha, in the confusion when i said what should i do with my siezure meds, the guy says well since your stable we will leave them the same?????????????? when were my seizures stable??? i said improved i think, never stable. and here i was talking about trying to improve the dr patient relationship. what a nut i am .... i give up. i dont know what to do. i dont honestly know what to do. but i am oddly calm and dont care. sorry for the complaining. take care kim

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Kim,

Did they jump on the Benadryl also-- that is the best antihistamine for allergic reaction.

Maybe now they'll take Baughman's advice and get you on the Cytoxan? I do wish they'd added teh MTX, it is formulated to work in conjunction with the Remicade--oh, well-- next step--onward and upward--

Hugs,

Tracie

[Guest guest]

the Drs actually ... one or two of them actually told me yesterday how i should be so thankful that my disease isnt much worse than it is. Now how is that for kicking a person when they are down?

Kim-- MD's are notorious for not having a clue-- As far as you taking on guilt over this-- don't waste your very precious energy there. You need it to get on with each day. and the MD's sure don't deserve to have that power over you-- so reclaim your energy.

I so understand your disappointment--- I'd be where you are-- your plate is so very full, with 2 young adult kids here in the states, and the 4 there with you, and they don't know what to believe-- Dad with his denial or Mom with what they can see as debilitating disease. I'm sure they'd like to believe Dad--because that would mean that you aren't sick. Bummer all the way around.

Kim-- I know in my heart that there is an answer. I know that you'll get there. It's hard when we know how well we've always functioned-- and to see ourself not being able to take care of us--yet alone the rest of the family, it really brings forth that fear of the unknown.

I guess our MD's think if we're walkign and talking--we're ok. I too have a story around this issue-- as I reached into the oven yesterday, pulled out a glass baking dish of chicken--without the potholder. I have no idea what I was thinking-- or what I wasn't thinking about. . .

This is where we take it one day at a time. Turn it over, Turn it over, turn it over. It's all we have. Kim, since you don't have the energy to fight right now-- trust that the MD's are going to get you going on something--and that they do have your best interest at heart.

I know that they are chasing symptoms-- since we don't know the cause behind this disease, and have no cure-- that's what we have to be willing to do-- calm the symptoms, and function with the highest quality of life we can have-- with this disease.

Sending you healing, Spiritual, Emotional, and Physical. You are loved,

Tracie