Karen 1 and Karen 2 are not nurses... sorry for the error before. But they are experts...
But apparently, in Oregon, where we live, they can't do infusions unless a doctor is in the office too.
Tuesday, May 5, 2009
TIRED!
I can see why they give us napping chairs. I'm super tired...
The room is filling up - chatty relatives, a nice man sitting next to me reading. There are 5 of us getting treatment, including another first timer who is having back pain. They've been adding steroid to her saline bag, and watching her super closely. She seems ok now.
The room is filling up - chatty relatives, a nice man sitting next to me reading. There are 5 of us getting treatment, including another first timer who is having back pain. They've been adding steroid to her saline bag, and watching her super closely. She seems ok now.
100 Ml per hour, and I'm feeling it
Ok, I'm definitely tired now. But blogging.
My spelling might get bad. be warned.
My spelling might get bad. be warned.
Conflict of interest
Ok, so the machine keeps beeping at me, it keeps getting mad.
Because my veins are so small, they had to put the needle in at the crook of my elbow. SO, now, when I bend my arm too much, it yells at me "downstream occlusion" and stops. They've moved it closer to me so I can run the machine myself. Kind ladies.
And they're heating up my gluten free quiche.
Because my veins are so small, they had to put the needle in at the crook of my elbow. SO, now, when I bend my arm too much, it yells at me "downstream occlusion" and stops. They've moved it closer to me so I can run the machine myself. Kind ladies.
And they're heating up my gluten free quiche.
Brad,Jennifer and Posh Spice...
A.K.A. ... what people who don't know each other, strapped to chairs, find to talk about.
These old ladies are pretty hip...
Next time I'm bringing a People Magazine...
These old ladies are pretty hip...
Next time I'm bringing a People Magazine...
"get that mouse in there"
Comment from this woman across the way.
(remicade is made out of mouse protein, or some such)
(remicade is made out of mouse protein, or some such)
Ok, just a few random items
They are playing the most annoying musak - fortunately very very quietly.
There is candy in the corner - with this metallic taste, one of those lollipops is looking really great right now.
MMM, strawberry.
There are very tempting junk fiction novels piled up in the corner - Jude Deveraux, here I come.
There is candy in the corner - with this metallic taste, one of those lollipops is looking really great right now.
MMM, strawberry.
There are very tempting junk fiction novels piled up in the corner - Jude Deveraux, here I come.
metallic
The oddest thing, too - when the saline went in I immediately tasted metal in my mouth.
Blood pressure time
116/72 - "very nice" Karen 2 says.
Blood pressure time
116/72 - "very nice" Karen 2 says.
Disconcerting
Ok, all three times I've been in this infusion room, I'm the youngest one here. By about 20 years.
Drugs are in... feeling fine.
Ok, I'm officially drugged.
First off, I just found out that both nurses in here are Karens. Plus, my fab rheumatologist's assistant is called Caren. So... we've numbered them - actually, they've numbered themselves.
Karen 1 took out 30ccs of my saline, from the saline drip bag, and then put in the 30ccs of the Remicade into the drip. And now it's dripping. (if someone asked about my dose of Remicade, I'm getting 300mg, in "medicine talk" she she says).
Apparently the Remicade comes in tablet form, and because it's quite expensive they don't mix it until you're here, IV in arm, ready to roll.
The first nurse (Karen 2) had a hard time getting the IV in both my R and L arms - I have tiny veins, and she gave up after poking me a bunch. Karen 1 then took over - she got it in one jab, and in my left arm (I'm left handed). We like both the Karens, but Karen 1 gets the prize.
Once I was stuck, they mixed up the Remicade and got it going.
The drip is hooked up to a machine which measures the doses out in 8 different steps - slow at first (for about an hour) and then increasing 'til they're just blasting the stuff in me at the end.
So here we go.
First off, I just found out that both nurses in here are Karens. Plus, my fab rheumatologist's assistant is called Caren. So... we've numbered them - actually, they've numbered themselves.
Karen 1 took out 30ccs of my saline, from the saline drip bag, and then put in the 30ccs of the Remicade into the drip. And now it's dripping. (if someone asked about my dose of Remicade, I'm getting 300mg, in "medicine talk" she she says).
Apparently the Remicade comes in tablet form, and because it's quite expensive they don't mix it until you're here, IV in arm, ready to roll.
The first nurse (Karen 2) had a hard time getting the IV in both my R and L arms - I have tiny veins, and she gave up after poking me a bunch. Karen 1 then took over - she got it in one jab, and in my left arm (I'm left handed). We like both the Karens, but Karen 1 gets the prize.
Once I was stuck, they mixed up the Remicade and got it going.
The drip is hooked up to a machine which measures the doses out in 8 different steps - slow at first (for about an hour) and then increasing 'til they're just blasting the stuff in me at the end.
So here we go.
Needle's in, waiting for the drugs
Ok, so I'm in a room, about 20x20, in a big comfy chair with my feet up. I think the flutters I'm feeling right now has to be nerves, because I've got no Remicade in me yet.
When you check in, they give you a form to fill out about whether or not you feel sick, you have a cold, cough, etc. No on all counts, for me, but the nurse just explained that they won't do the treatment if I'm sick, and I should call first if I feel bad.
There are 10 chairs in here...
OH< wait, here come the drugs. More in a minute.
When you check in, they give you a form to fill out about whether or not you feel sick, you have a cold, cough, etc. No on all counts, for me, but the nurse just explained that they won't do the treatment if I'm sick, and I should call first if I feel bad.
There are 10 chairs in here...
OH< wait, here come the drugs. More in a minute.
Pre-Remicade jitters, seriously, now...
Ok, so I've had a rough few days, and as I mentioned yesterday, I haven't had a lot of time to do research on what it is actually like to get Remicade. So yesterday I turned to the Internet to find some answers, and completely freaked out.
Some people throw up, all during treatment.
Some people can't breathe.
Some people get terribly tired, and have to sleep for days.
One person I read about had to go to the E.R.
I didn't plan well. I'm home alone with my two kids this week - hubby is traveling again. What if any, or all of these things happen to me today? After all this reading, hyperventilation ensued, at about 4:30 yesterday afternoon.
So what did a brave girl like me do with all this terrifying information? I called fab rheumatologist's office immediately, and tried to talk them into cancelling my treatment.
They were very reassuring. They told me they have never had a huge problem in their office, that only a handful of their 400 patients have allergic reactions, and that at most I would just be sleepy, like I am when I'm having a flare. And that was unlikely.
But I should call someone, just in case, to make sure I have back up child care for the kids.
If it weren't for the fact that I'm going to Europe in 3 days (3 DAYS! WOW!) I would have canceled and waited til my hubby is home. But I want the treatment - my Humira is wearing off, and my knee is on FIRE every night.
So I'm going for it. I have two girlfriends on standby, and have an easy day tomorrow.
Stay posted. I have to go see Laser Lady in a few minutes (burn, baby, burn) and then I'm off to my infusion.
Some people throw up, all during treatment.
Some people can't breathe.
Some people get terribly tired, and have to sleep for days.
One person I read about had to go to the E.R.
I didn't plan well. I'm home alone with my two kids this week - hubby is traveling again. What if any, or all of these things happen to me today? After all this reading, hyperventilation ensued, at about 4:30 yesterday afternoon.
So what did a brave girl like me do with all this terrifying information? I called fab rheumatologist's office immediately, and tried to talk them into cancelling my treatment.
They were very reassuring. They told me they have never had a huge problem in their office, that only a handful of their 400 patients have allergic reactions, and that at most I would just be sleepy, like I am when I'm having a flare. And that was unlikely.
But I should call someone, just in case, to make sure I have back up child care for the kids.
If it weren't for the fact that I'm going to Europe in 3 days (3 DAYS! WOW!) I would have canceled and waited til my hubby is home. But I want the treatment - my Humira is wearing off, and my knee is on FIRE every night.
So I'm going for it. I have two girlfriends on standby, and have an easy day tomorrow.
Stay posted. I have to go see Laser Lady in a few minutes (burn, baby, burn) and then I'm off to my infusion.
Pre-Remicade Jitters - what do I wear?
Ok, I kid you not, that was my big freak-out this morning. What do you wear to your first Remicade infusion? I know I want to be warm and comfortable, and they'll need easy access to my arms.
But I want to look cute, too. I might be 42, but I'm really 18 at heart.
I settled on Gap jeans, a white long sleeved shirt and a very comfy green sweater, with a blue scarf. Plus some gorgeous blue glass jewelry that sets off my eyes. Perfect.
And, of course, clean underwear. In case I pass out and have to go to the E.R. One always needs clean underwear in the E.R.
But I want to look cute, too. I might be 42, but I'm really 18 at heart.
I settled on Gap jeans, a white long sleeved shirt and a very comfy green sweater, with a blue scarf. Plus some gorgeous blue glass jewelry that sets off my eyes. Perfect.
And, of course, clean underwear. In case I pass out and have to go to the E.R. One always needs clean underwear in the E.R.
Monday, May 4, 2009
N=1 - Remicade (Infliximab) tomorrow
The last few weeks have been a bit bumpy - first my prednisone adventure, then a shot in the toe to fight the dactylitis. And then my grandmother died on Thursday, which drenched the little spark that keeps me writing with a vat of tears.
Suddenly it's Monday, and I'm starting Remicade tomorrow. I've been too caught up in everything else to think much about the comfy chairs, the free candy, and the two hour IV drip that Remicade infusions promise. But I guess I should get my head in the game.
I'm going on Remicade because my fab rheumatologist wants me to be doing better. We've decided that Humira is only taking me 75% of the way to "well". Our goal is 100%.
So what is Remicade? Here's a nice little blurb on Remicade and Psoriatic Arthritis from the Remicade website. Infliximab was developed at NYU School of Medicine, and is produced by Centocor, which is now owned by Johnson and Johnson. It is a TNF-Alpha blocker, like Humira. According to my doc, it has as good of a chance of working on my arthritis as Humira, but possibly will do better things for my skin. (Poor Laser Lady, we'll be putting her out of a job). Here's the blurb from Wikipedia on this drug.
So, here's the deal. Tomorrow, if the rheumatologist's office has their wifi up, I'm going to live-blog my Remicade infusion. Sure, it's not the State of the Union or the Blazers' game, but I think it will be fun. If you've been wondering what it's like to have Remicade, tune in at about noon PST. I'll write every 20 minutes or so, just to tell y'all what's happening in that room of big vinyl chairs. Does the needle hurt? Does it burn when it goes in? Did I get dizzy and pass out?
Way more fun than a Blazers' game.
If they don't have their wifi up, I'll blog it all in Word and transfer it over to Blogger when I get back home, so look for it by 5pm PST (children permitting).
Wish me luck. It can't be as bad as a death in the family, right?
Suddenly it's Monday, and I'm starting Remicade tomorrow. I've been too caught up in everything else to think much about the comfy chairs, the free candy, and the two hour IV drip that Remicade infusions promise. But I guess I should get my head in the game.
I'm going on Remicade because my fab rheumatologist wants me to be doing better. We've decided that Humira is only taking me 75% of the way to "well". Our goal is 100%.
So what is Remicade? Here's a nice little blurb on Remicade and Psoriatic Arthritis from the Remicade website. Infliximab was developed at NYU School of Medicine, and is produced by Centocor, which is now owned by Johnson and Johnson. It is a TNF-Alpha blocker, like Humira. According to my doc, it has as good of a chance of working on my arthritis as Humira, but possibly will do better things for my skin. (Poor Laser Lady, we'll be putting her out of a job). Here's the blurb from Wikipedia on this drug.
So, here's the deal. Tomorrow, if the rheumatologist's office has their wifi up, I'm going to live-blog my Remicade infusion. Sure, it's not the State of the Union or the Blazers' game, but I think it will be fun. If you've been wondering what it's like to have Remicade, tune in at about noon PST. I'll write every 20 minutes or so, just to tell y'all what's happening in that room of big vinyl chairs. Does the needle hurt? Does it burn when it goes in? Did I get dizzy and pass out?
Way more fun than a Blazers' game.
If they don't have their wifi up, I'll blog it all in Word and transfer it over to Blogger when I get back home, so look for it by 5pm PST (children permitting).
Wish me luck. It can't be as bad as a death in the family, right?
Friday, May 1, 2009
Video on laser treatment, thoughts on words...
Here's a great little video from a local news station about excimer laser treatment... just in case you were interested in seeing what the treatment looks like. (BTW, I love that the ad they chose to show before the video is for a beach resort... in the video the patient complains that she was told to leave a beach because of her psoriasis!).
And, on that note... I'm getting really tired of how often the word "embarrassing" is used in conjunction with the word "psoriasis". True, it can be embarrassing, but is it THAT MUCH more embarrassing than other physically visible diseases out there? Do we say "the embarrassment of a broken arm?" or "the embarrassment of being a quadriplegic?". No! Why the lack of sensitivity for psoriasis?
Lets get rid of the word "heartbreak" too, while we're at it.
Anyway, just a quick morning thought. Laser lady had to cancel our appointment today - I'm having withdrawals... I was really enjoying working on my elbow tan.
And, on that note... I'm getting really tired of how often the word "embarrassing" is used in conjunction with the word "psoriasis". True, it can be embarrassing, but is it THAT MUCH more embarrassing than other physically visible diseases out there? Do we say "the embarrassment of a broken arm?" or "the embarrassment of being a quadriplegic?". No! Why the lack of sensitivity for psoriasis?
Lets get rid of the word "heartbreak" too, while we're at it.
Anyway, just a quick morning thought. Laser lady had to cancel our appointment today - I'm having withdrawals... I was really enjoying working on my elbow tan.
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