Add This to the IV Bag!

3rd try.

3rd try.

It’s Remicade day again! Half way sad day though, found out my infusion nurse retired.  She was awesome!  I didn’t have to make small talk with her, she learned right away that I don’t like to chit chat.  After almost two years, she got my IVs down to a literal science.  She used me as an example to another infusion nurse ( I have notoriously bad veins ).  She also had some major balls too.  I’m sad to see her go, but I’m looking forward to breaking in a new nurse.

Remicade is definitely needed though.  I’m still having a really hard time managing my symptoms.  Hell, what should have been a simple drive in, turned into an hour and a half with 4 different stops.  I’ve put myself on a soft diet and am drinking my teas, but alas… bathroom bound I am.  The fatigue is ridiculous today too.  I had a hard time staying alert this morning on the way in.  My entire body feels like it’s going through prednisone withdrawl (not on steroids at the moment), or for non-steroid-taking people, like I have the flu… and have for 3 weeks. It’s starting to get too uncomfortable for me to sleep, and now I’m not just tired from the disease but because I’m getting so very few hours of ZZZZZZs.  I’m keeping my fingers crossed that the Remicade will help, I can deal with the complications of my Crohns, but the symptoms on top of it?  Not so much.  What is new this time around is the joint pain.  For the past few years I have had joint pain in my knees and hips, especially before Remicade.  Now my shoulders and wrists are bothering me.  It’s worth bringing up to my doc again, because it’s getting to be a little much.

I don’t know.  Regardless, like I said before, this flare has me down.  I’m doing my best to pick myself back up off the metaphorical floor.  I’ve been putting a lot of my energy towards writing, it’s always helped me no matter the situation.  Beyond writing, I’ve just thrown myself back into music.  I realized the other day I had kind of drifted away from listening to music.  Instead of damn near all day, it was just on the commute into work.  So I made it a point to keep the music going as long as possible.  (On a Punk Rock/Psychobilly kick again.)  It’s definitely easier to deal with the day to day crap if I can turn on some tunes that I love.

For now?  I got such an odd reaction when I asked if we could add coffee to the IV bag, it might be worth taking a couple laps around the nurses desk and get to know the newbie.  :)



One thought on “Add This to the IV Bag!

  1. Hey there,
    I am never sure whether to like posts like this… I dont like that you have the experience to write this post… But I admire the way you deal, so I like your words… Anyway… I am terribly sorry to hear you had to do the infusion thing again. Let me kniw if you need some books to keep you company.
    Xo – S.

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