Remicade Protocol #237472

It was Remi-Day on Monday. Praise the lawd I guess, because I sure had flare symptoms.

I didn’t sleep well and thought I could take care of that at the practice. But no, this didn’t happen because they must have booked several people at once. So as I get my chair, I overhear that Travis’ ex got engaged, only a year after their break up (tut tut), I hear another man describing his golf adventure in painful detail, and I notice that the wall of the counter has a chip. Great, now I have something that will bother me for the next two hours. There have to be means and ways to make this process more bearable. Yes, the nurses are nice and do their best, but seriously. Why can’t I just get an infusion cart? I could sit at the cafe downstairs, at a table, work! Or walk around. But no, in case I get a reaction! So we’re all sitting in a comical version of the panopticon- semi circle, divided from the nurses by a counter, but always in their sight.

 

I try not to drink too much water because every time I need to go to the bathroom, I have to tell them, they disconnect me from my machine, I go into a bathroom I can’t lock, but since everyone has seen me go in there, nobody will bother me. Having witnessed others go, I also know that they will hear EVERYTHING. Glad that I don’t care.  I know about Travis’ ex girlfriend’s engagement, they know about my tiny bladder. People often romantizise these types of stations, whether it is for chemo or other treatments. Especially women tend to bond over their shared experience. If you’re fighting cancer, that makes sense I guess. And the nurses are really nice! I however hate every minute of sitting here. I am as social as the next person,  but this Remicade situation strikes me as so bizarre and absurd every time. I have chosen the most doable scenario for myself. I get the early appointments, on days that my husband can stay home later, so he can walk the dog and I still have the rest of the day to work and do my thing. The one time I didn’t do this, and I got the last appointment of the day, I lost my wedding ring, so there is superstition involved (hey, I was raised catholic and in Europe) as well. The clinic doesn’t stay open later than five, so how people that have regular jobs, husbands/partners without flexible work times, kids to pick up from school do it, I don’t know. Do they take vacation days? How is this sustainable?

I don’t mean to complain. Compared to how and where I have been, this is golden.  Still, Remicade days turn me into a misanthrope.

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2 responses to Remicade Protocol #237472

  1. omydaisy says:

    I loved this! I hate infusion days too, I often wish I didn’t hate needles and could have gone the Humira self injection route. (My insurance voluntold me for Remicade.) To answer your question though, I work an 8-5 and up until two infusions ago, I was taking sick leave for treatment. I hated it, I was burning leave as fast as I was earning it and was always fearful of actually getting sick. I have since worked it out to where I do a flex schedule the week of, so I get my full fourty in, and can still take the day for treatment. What a blessed life we live!

    Like

    • vjhutter says:

      I used to do humira and cimzia (not at the same time), but they wouldn’t work. They had their own problems (planning to write about that at some other point), from insurance dropping me at random, to specialty pharmacies messing up my orders. I am glad you could work out something with your work though!!

      Like

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