Remicade treatment in a couple of days

[OrangePixyStix]

Well, I go in for my 5th infusion on Friday, and I was kind of hoping to go alone this time.  I made the mistake of telling the H when he asked about my next appointment and now he's already taken the day off to go with me.   I think next time I just won't tell him until after I go so he won't insist on being there.   

It's nice to have someone there, especially to bring me food to eat since I can't go anywhere, but I end up sleeping half the time due to the pre-meds and then he looks SO bored when I wake up and gets antsy waiting around.   I know he's concerned and just wants to make sure I'm comfortable but at this point I know the routine and think it would be nice to just be alone during the process and not feel like I have to entertain the other bored person waiting in the room with me.    

Does that make me sound ungrateful?  I feel bad telling him I'd prefer him to not come, especially when he just wants to help, but I have a hard time trying to find a nice way to say that without acting like I'm unappreciative of him taking the time to do it in the past.     Maybe this time he'll bring his own pillow and take a super long nap with me, or I'll tell him to grab a redbox DVD and can put that on while I'm sleeping. 

[bcv513]

I know how you feel. My FI has come to every doctor's appointment I've had. I feel guilty that I'm taking him away from work for even an hour. I'd feel horrible if it was for a whole day. I don't think you're ungrateful. Just tell him what you told us.

[OrangePixyStix]

Thanks for the reply. We talked last night and he said his main concern was about me driving myself home afterwards and that is why he wanted to be there. Kinda strange since there are no orders saying I can't drive, and the drug isn't strong enough to impair motor skills or anything. I guess he thinks since I get so drowsy during the treatment that it's risky for me to drive myself home after, but usually the pre-meds are worn off by that time and truly I don't have more than 10 miles to drive to get home from the hospital.

Ahh well, he's still going to come with me tomorrow but hopefully it won't take as long as last time and we can get out of there sooner. I can appreciate him being concerned enough to be with me through the whole thing, but I still want to go alone next time and try to spare him the half-day of waiting around when there's really no reason.

[centralperk]

I had someone with me for my first few infusions. I'm about to hit the 3 year mark though, and I've been going alone for a while. I also get premeds and they make me really tired. I find the infusion itself makes me very tired for a few days, as well. There's no way I would drive after my infusions, but obviously everyone reacts differently. I take public transportation home so it's not an issue.

If he wants to drive you home, is there a way you can get there yourself using public transportation or something, and then he can pick you up?

I hope your infusion goes well! Remicade is awesome.

[OrangePixyStix]

3 years and still working well for you!? That's awesome! And encouraging... sometimes I feel like I'm spending a buttload of time and money without knowing if it's really working or not. I'm glad to know you are doing well on it!

Unfortunately, I live out in the suburbs of West Houston and there is little public transportation available. However, my mom is a realtor with a flexible-schedule so she's always offered to come and drive me as well; I always have that option since she is also close by.

Appreciate the suggestions and well wishes! It's definitely worth all the hassle to improve my health and get better.

[centralperk]

May 23, 2013 8:37:51 GMT -5 OrangePixyStix said:

3 years and still working well for you!? That's awesome! And encouraging... sometimes I feel like I'm spending a buttload of time and money without knowing if it's really working or not. I'm glad to know you are doing well on it!

Unfortunately, I live out in the suburbs of West Houston and there is little public transportation available. However, my mom is a realtor with a flexible-schedule so she's always offered to come and drive me as well; I always have that option since she is also close by.

Appreciate the suggestions and well wishes! It's definitely worth all the hassle to improve my health and get better.

Ohh that's too bad there's no public transportation. I hope you figure something out. Don't risk driving if you don't feel 100% though, it's not worth it! Hopefully you can find a way to get a ride but not have to have someone stay there with you. I find with my premeds, I can't really sleep but I get so out of it, I often just lie there and, like, stare at the wall. And then the nurse comes in and always wants me to fill in this form. Every time I ask her to please give it to me when I get there, because after I'm pre-medicated, I can barely read the words on the form. haha!

[Deleted]

I agree with PP - I would not be ok to drive after premeds. I haven't been able to get remicade infusions yet but I do get iron infusions for anemia and I always zonk out for a couple hours while I'm there, eat lunch with SO, take a cab home, and usually sleep for a few more hours then.

[greenscreen]

I think it really sweet that he wants to be there. I drove myself once and it was a terrible idea. I was really too tired to drive home. Now, our compromise is that I get a ride each way. I like to read or chat with other people while I'm there anyway. I actually had an infusion today.

[audry80]

My DH always goes to all my appointments and tests. I have told him numerous times I am ok to go myself but he says he doesn't just go for me... He goes for himself. I think it's part of the healing process and being able to see for himself I am ok. I agree with Carrots, let him take care of you!

[OrangePixyStix]

Thanks for the feedback and support, all.   I didn't realize so many felt like they would be unable to drive themselves and I guess there is a reason to listen to his concerns about the risk of driving myself.     I may just be a bit stubborn, but need to learn to accept help even if to me it seems like it isn't required. 

May 24, 2013 0:28:08 GMT -5 greenscreen said:

I think it really sweet that he wants to be there. I drove myself once and it was a terrible idea. I was really too tired to drive home. Now, our compromise is that I get a ride each way. I like to read or chat with other people while I'm there anyway. I actually had an infusion today.

How frequent do you go?   I'm on the every-8-weeks plan right now.     I'm glad to not have to go back until mid-July now! 

[greenscreen]

I, too, am on the 8 week plan. Right now, it is working!
I was previously doing Humira shots at home 1X per week, and I find Remicade to be SO much less stressful. I love the long intervals in between treatments!

[OrangePixyStix]

Ooh, then we are currently synced Remi-buddies! I'm glad it's working out well for you. This is the first long-term treatment I've tried (was diagnosed last year) so I'm hoping it is a miracle-drug for me as well.

[greenscreen]

I really hope it is a miracle worker for you too! Definitely post updates of your progress.

[aimeedyan]

I've never even thought of having someone drive me... after both Remicade and iron with premeds. Guess it just depends on the person

That's sweet of him to want to come, but I imagine he's bored out of his mind! I've never had anyone come with me and usually spent the time snoozing or studying. I never invite my DH to my appts for anything because he has limited time off and I don't want him wasting it at my doctors appts - I want them saved for vacations LOL. Though I must admit he's never ever offered... maybe yours can give mine lessons?

Hope it works for a really long time! I was on it 2 years and it was a true miracle drug!