The infusion on Tuesday wasn’t too bad. I am resigned to having to do them, so I’m glad it wasn’t horrid. They actually managed to get a vein, although it was my “best” vein. I only have the one that cooperates. The rest are either flat, sink, roll, flash, or plain old refuse to show up for the performance. It’s always been this way. When I was 17 I had the 5-hour glucose test and they ended up poking me 9 times in 5 hours. My veins simply refused to cooperate. I now warn people but it doesn’t always work. My *favorite* people are the ones who get overly cocky and are like “psh, I’m a master at this, you’ll be no problem because I do this all the time” and then my veins are like “fuck you, asshole, I refuse and you can’t make me”. I end up going “I told you..” I was 12 weeks along in this photo, which is 2 weeks after I went to the hospital for pains and they tried to get an IV. You see that bruise? Yeah, that’s from a trainee EMT trying to put in an IV. I warned him, he insisted, and that one flashed him. (No, I wasn’t that big at 12 weeks clearly – if you look, you can see the fake tummy from the store. I was using it to see how the shirts would look and if the pants would fit…but I got bigger than that by the end.)IMG_0124

Anyways, back to the infusion. She listened to me, found a vein, and off we went. They gave me some ben.adryl which made me hella sleepy. I probably slept for a little over an hour during it. It was, however, absolutely freezing in that room. I’ve worked in call centers that were warmer! They offer blankets but it wasn’t nearly enough. I will probably drag my own next time AND use one of theirs. And I know to dress even warmer, although I’m not sure how I’m going to do that. I don’t want to wear anything that is long sleeved because they have to get that IV up near my elbow. I don’t have a lot of warm things that I can just pull up. Maybe wear a tshirt and a flannel, then just either unbutton the sleeve and pull it up or pull that arm out? And wear gloves. My fingernails were purple!

I go back in about a week and a half. Then four weeks later. And then every six weeks. I hope that it stays the same as it is now and my single cooperative vein doesn’t give up the ghost. It already gets poked every 10 weeks and I’m always concerned that the next time it won’t work anymore. The good news is that they will be taking my blood at the same time they do these infusions, so it’s not infusion every 6 and blood draw every 10. Apparently now, in addition to checking my liver and kidney, they have to seriously keep track of my WBC because this is a biological, which means it suppresses my immune system. The en.brel did that too, but this one is different and stronger, and there’s a very real risk that they will suppress it too far. I remain concerned that I am now on three drugs that are harsh on my kidneys and liver. I am concerned that this long term harshness is going to cause problems down the road by doing damage that my body can’t recover from…but what is my other choice? Not take the meds and be in lots of pain and not be able to do things with my son because I can barely move? If I don’t take the meds, the inflammation gets worse and rages out of control. The constant inflammation is bad on the joints and, left unchecked, the AS can fuse my spine. Or take them and continue to risk damage and have my liver and/or my kidneys give out later? I feel like I have naught but bad choices in front of me and it makes me want to cry and/or rage. Fuck my body for doing this. Fuck it for making me have to make these choices. Fuck it. Fuck it all.

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  1. Reminds me of the careful balancing act Mom had to put on to keep Grandpa going. Give him enough of this so his heart isn’t in distress, but not so much that it impacts his kidneys. (Fine tuning it every day based on a bunch of subtle signs.) And so on with several other meds. Did that for years.

    Life doesn’t give us what we want. We just have to make the most of the hand we’re dealt.

    Still, I’m sorry you’re being put in this position. I hope you can find something that works. And that they come up with better options for you down the road.

    As for the veins… I’ve got tricky ones, too. My best vein got so overused that it went too deep to find. Another one got used so much it started to collapse after a single vial. And then the doctor ordered plasmaphersis for me. I had to be hooked up to basically a dialysis machine for a couple of hours a day, three times a week, for a few weeks. Which meant they had to find two good veins every time (one to draw from, one to return) while the machine filtered all the blood in my entire body. By the end of it… I was pretty bruised and it was very difficult. But that tech became an *expert* on my veins. So when, a few weeks later, I needed to get an infusion of something else in a different part of the hospital, we ended up having to call her in to do it.

    Sounds like you’ve got it much worse than I did. That really sucks. All I can say is you have my sympathy and best wishes. Good luck holding up.

  2. Oh hon, that sucks. May that vein continue to behave. Maybe buy a cheap sweatshirt at Michaels or AC Moore, and then cut that one sleeve up to your elbow, and secure it closed with a button at the wrist. That way you can be wearing an extra sweatshirt, but the arm will be accessible?

    • It’s possible. I might also just wear a tank top under a long sleeved shirt and pull that arm out. That way the other is covered and my shirt can actually still cover the IV’d arm. Blankets and gloves oh my!


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