- Joined
- Dec 11, 2014
- Messages
- 11
Look, I'm feeling overall much better and my symptoms have decreased so much there are weeks where I feel almost normal! So, I'm grateful for Remicade and it has helped bunches, but there are a few things and I just want to rant.
Beginning of rant:
My doctor's office wasn't able to find a vein for the infusion so I started with Good Samaritan Day Treatment in Portland. They could usually find a vein after the second or third stick, and someone sent me some heparin cream from a Russian pharmacy so the bruises are usually gone after a few days instead of leaving me black and blue for two weeks.
And Good Sam did nice stuff, like having a private room so you could zone out on TV, and covering you with a warm blanket, and having a volunteer come by and offer you a drink or some lunch. This is silly, but I would schedule my treatments on a Friday so I could get a bowl of clam chowder, a guilty pleasure for me that made it all sort of a reward instead of a punishment. You go in for a treatment and they nourish you. It was sweet. It made me feel valued.
Then Oregon Health Sciences University (OHSU) took over Day Treatment. They expanded the unit and remodeled and took out all the private spaces. It's like a factory now, with chairs close to chairs and everybody seeing each other's ports and tubing. And no more volunteers. And no more lunch. And no more blankets. And no more drinks, though there is a station where it looks like you could get up and go get something if you knew how to disconnect the IV tubing so you could get up--I'm not even sure if that's for patients or staff.
And now, they have stopped drawing labs when I go in for my infusion. So, instead of sparing me another traumatic event (although some of the lab techs do get me on the first stick. Wish they could insert the IV before I go down to Day Treatment.) they have informed me they are not a lab and will not draw blood before my IV infusion.
So, Okay. I go because I need the Remicade and it has helped me in so many ways. I bring my own blanket and try to remember to bring a sandwich or a bottle of water. I asked my doctor for Xanax to take before the needlefest. And I just try to get through it, because, there are worse things than being cold, hungry, thirsty, and bruised, and I know that.
But I still feel bad about it and wish there were another place in Portland to get a Remicade infusion. And I secretly hope for antibodies so I can switch medication to something I can inject myself.
End of Rant. Hope everyone has a good week, with few or even no symptoms!
Beginning of rant:
My doctor's office wasn't able to find a vein for the infusion so I started with Good Samaritan Day Treatment in Portland. They could usually find a vein after the second or third stick, and someone sent me some heparin cream from a Russian pharmacy so the bruises are usually gone after a few days instead of leaving me black and blue for two weeks.
And Good Sam did nice stuff, like having a private room so you could zone out on TV, and covering you with a warm blanket, and having a volunteer come by and offer you a drink or some lunch. This is silly, but I would schedule my treatments on a Friday so I could get a bowl of clam chowder, a guilty pleasure for me that made it all sort of a reward instead of a punishment. You go in for a treatment and they nourish you. It was sweet. It made me feel valued.
Then Oregon Health Sciences University (OHSU) took over Day Treatment. They expanded the unit and remodeled and took out all the private spaces. It's like a factory now, with chairs close to chairs and everybody seeing each other's ports and tubing. And no more volunteers. And no more lunch. And no more blankets. And no more drinks, though there is a station where it looks like you could get up and go get something if you knew how to disconnect the IV tubing so you could get up--I'm not even sure if that's for patients or staff.
And now, they have stopped drawing labs when I go in for my infusion. So, instead of sparing me another traumatic event (although some of the lab techs do get me on the first stick. Wish they could insert the IV before I go down to Day Treatment.) they have informed me they are not a lab and will not draw blood before my IV infusion.
So, Okay. I go because I need the Remicade and it has helped me in so many ways. I bring my own blanket and try to remember to bring a sandwich or a bottle of water. I asked my doctor for Xanax to take before the needlefest. And I just try to get through it, because, there are worse things than being cold, hungry, thirsty, and bruised, and I know that.
But I still feel bad about it and wish there were another place in Portland to get a Remicade infusion. And I secretly hope for antibodies so I can switch medication to something I can inject myself.
End of Rant. Hope everyone has a good week, with few or even no symptoms!
