Friday, February 01, 2008 12:50:10 PM
on wednesday (1/30/08), i had my first at home remicade iv treatment. as explained to me by my nurse robert, it's a biological med that hopefully at first confuses my t cells and b cells so that they'll stop attacking my immune system and then in the long run re-trains them to attack the things they are supposed to (viruses ~ bacterial and virual).
i was very nervous about starting this med for a few reasons.
first off, when i got the delivery of supplies - "lab in a box" - i freaked out a bit! ok, it scared the hell out of me! as my nurse robert said "don't let all of this scare you! you probably thought 'what the hell am i getting myself into?!'" but, it did. i put off my first treatment from 1/9 to 1/30! (told him i had a sinus infection and then the next day i got whammied by a nasty sinus infection!!!)
second of all, i thought this would supress my immune system completely and i was very uncomfortable with that idea and couldn't understand how that could lead me to not end up being sick all the time and did that mean that all the things i've been trying to do to boost my immune system are pointless?
third of all, this is my last shot so to speak! there are about 4 meds approved for my classification of arthritis (sero-negative) and 1 was a pill form that really didn't do anything more than make me queasy and later gave me a chronic upset stomach! i can't take humera because there's latex in the actual medication & i'm allergic to latex, so i couldn't take that at all. (good lookin' out there on my pharmacists part!) i took enbrel for 8 months and for 6 months my migranes came back more than full force to the point i wanted to blow my head off! so i stopped taking it in august. (my doc agreed that we shoudn't go back down that road again!)
so, that's where i'm at now with the remicade. if this works, fantastic! but if this doesn't, where does that leave me?!
but the whole experience went very well here on wednesday! robert, my nurse, has a great personality and was able to make inserting the cafiter into my hand hurt no more than when i've had blood drawn in the past ~ i haven't bruised or swelled up or been in pain since he took it out and that it something, let me tell you! he really was great! if he hadn't been, i may have opted to continue treatments as an out-patient at one of the local hospitals!
my friend michelle, my mom and my aunt judy were all here! mom got here first, then michelle arrived and within an hour of michelle leaving my aunt judy arrived! robert got me all set up in the kitchen and i was able to sit out in the living room and talk with everyone (my iv pole has wheels!), i was able to go to the bathroom when i needed to, robert also talked with everyone as well and came into the living room to check my blood pressure & pulse every 20 minutes. michelle, mom and aunt judy all asked robert questions. there was a lot of laughter between me & robert and also among all of us!
i got very mad at hubby last night. he's so damn literal sometimes and therefore misses the actual point. i wasn't afraid of having a needle/iv in my arm! been there & done that more than he ever has! but, i've never been on this type of strong meds before and i've never done anything like this at home before! not to mention the fact that this is basically my last shot and if this works, great, but if it doesn't, then what?! and having support takes some of the worry off of my heart and like they say with cancer patients going through treatment, moral & emotional support seems to have shown that it helps treatments work! yes, it was wonderful having michelle, mom & aunt judy here on wednesday, getting an email from gillian on tuesday night, getting a call from brenda wednesday night and a call from kathy on thursday morning along with calls from michelle, mom & aunt judy. but i love hubby more than any other person in this world, in my lifetime and he just truly doesn't seem to give a shit and that's is just heart breaking.
i should not have had to tell him that he had to come strait home on wednesday night. that should've been his first reaction & instinct when jack asked him on tuesday if he'd help him move some stuff. and jack should've told him to go home once hubby told him about it. (i like the way jack tried kissing my ass last night via text mail by saying he's been tremendously busy moving and didn't get a chance to call to see how i was doing ~ nice try bucko!) hubby's been telling me since the beginning of us that he wants me to get better and this is how he treats me at a time like this?! i'm so good at ignoring hurt that it really didn't bother me on wednesday so much because i was distracted, but when he came home he didn't even ask how i was or even seem to listen when i explained how the meds work and what i have to do and look out for for the next few days.
i tried being nice about it last night but then he got angry at me as if i was being ridiculous and then tried to put it on me by saying he asked me if i wanted him to come right home and i said no and that he called 3 or 4 times on wednesday to see how i was! (which he didn't! he called at 8:30a to tell me the electrician was coming to check the lights ~ he called on his lunch & asked how it was going but i wasn't even hooked up yet so he told me to call when i was done and when i did he was like "why are you calling?" and then he called to tell me that he was on the way to jack's storage unit and it was only going to be one trip. then he called to tell me he was meeting michael at friday's for dinner and didn't get home until well after 9pm! so how many times did he call to see how i was doing?!) again, he just truly seems like he doesn't give a shit.
it just sucks that wednesday actually was a good experience ~ so far with the meds, with my nurse robert and with my friends & family being there ~ and there has to be something that puts a shadow over the whole thing.
i want this to work! i want this to be a positive experience! i don't want there to be any hurtful and negative experiences during this! now that i better understand how the med works (remicade), i really want this to work and hoping that it does.
ok, sorry about that little rant about hubby there! that wasn't supposed to be the point of this! so, anyway, my next treatment is here at home on wednesday, 2/13/08 around 10:30am.