Just kidding
I am actually tired. Did not get much sleep last night, I got maybe 3 hours of sleep. I just could not fall asleep. I think it was the 20mg of pred that made me not want to go to sleep.
So... hubby came home from work around 11am and then we went to eat and then headed on the 1hr journey to RD's office.
Hubby dropped me off and took son with him and they went shopping. Not really shopping, they just went and looked around.
Remicade nurses name is Becky. She is really nice. She explained a lot about what Remicade was and answered all of my questions. She asked how old I was I told her 28, and she said I thought you were at least 22, because you do look your than your age.
Then came the IV part... OUCH! It hurt. She explained why it hurt to me, something about it being spring loaded and she has no control over how hard it jabbs in. She got it on the first try. She did not think she was, because my veins were contricted from being cold.
I took the Allegra and tylenol arthritis an hour before and it made me a zombie, because I was already tired and it made me even more tired.
There was a old woman getting her first remicade infusion, she was almost done when I got in there. She was really nosey... not just me saying that even her husband told her she was too nosey.
Then about a hour before I was done a guy came in and wanted the infusion done in less than 1hr 30mins. Yeah... he told the nurse at the other RD he had they had his done before 1hr 30mins. She asked how long he was on Remicade he said over a year. So she let his drip go a little faster than mine. He kept staring at the IV bag like he was trying to will it to drip faster or something. And then... he was yelling for her because the IV popped outta his vein inside his arm, his was done in the elbow part and he was playing around with the cord trying make the remicade go in faster and inturn made the IV pop out and it was draining into his arm and making his arm swell.
Then... I told her to ask RD if she could do something about my muscle spasms I am having... so she opted to see me. So... I was her last patient for the day.
She messed around moving my hip and all, and told me it was from swelling probably and she wanted me to get an x-ray of it tomorrow since I am having such a hard time walking and in so much pain and all. So... tomorrow... I am off for another 1hr trip to RD's office for x-rays of my hip.
On Monday I go back for a follow up and then my next infusion is the 27th. Then I get another one 4 weeks from the 27th and then none until 8 weeks.
She said my twitching was probably from the prednisone. Which I already firgured that.
My appt was not until 1:15pm and we did not leave the RD's office until 5:30pm.
She is lossing a lot of her employees. One got pissed and quit last week, and her office manager is quiting to stay home with her kids. So... they will not have an office manager for a while it sounded like. Everyone working there has been assigned different tasks that the office manager use to do.
Then... an RD a county over closed shop and all of her patients are trying to get in with my RD. So she is going to have even more patients to deal with. They are already at the no more appts for new patients until end of May. And when I got there it was no more new patients until beginning of April.
My knees do feel better. I felt like I was walking a little better when I had to go into wal-mar (the T is still out) to get my RXs and to see if they would retro bill medicaid for that 0 hubby paid them, which they are going to. YAY!!
Sounds like an interesting day. Glad you're already feeling better. It kinda stinks that your RD is so far away, but it's gotta be worth the trip to have a god doc and finally starting to get back on track with your treatment.Woohoo! FINALLY!!!!
I can still remember the day following my first Remicade infusion...much less pain and TON'S of energy! Hope it works that way for you too!
Yeah. I like her. She does take her time and she even remembers me now
Oh and the woman at the pharmacy knows me by my first name... now that tells you about just how much meds I have been getting as of lately. I walk up and she greets me by my first name way before seeing the RX sheet.
Thanks Gale, I hope it does to. My house is turned upside down and I do not think hubby is going to do anything about it all. It was a scarey needle. I told her I was afraid of needles, so she went down a size for me.
I hope you get a good RD, when you finally get to see one.
i just hope she does not find anything too bad wrong with my hip tomorrow.
i am going to try to sleep some will talk to ya'll more when i wake up later tonight.
Hey Joonie, if you could convince her to move her office closer, you could work reception for her!!!!!!!
TWO BIRDS WITH ONE STONE BABY!!!
Go Joonie Well done!!
Good girl...it is finished! Now sleep dear one, sleep. I think I got left out of the whole feeling tons better and having energy. It takes me three days to recover, but I do have less pain. I will take the three days. Joonie, good work on the needle front---I knew you could do it! Good-glad it went well for you.
I wish I could have had my infusions in an 1 1/2 like that guy. When I was
on Remicade the appointments were like 3 hrs. The Orenica is supposed
to be faster but the appointments seem to take longer cause they are not
allowed to mix it at the office. The hospital has to send it over and won't
send it until the patient has an IV running.
Oh well--if it works then it is worth it. Glad that they are getting xrays
for you. Hopefully this will pinpoint the cause of your pain so you can get
some relief.
BeckyJoonie, I hope that the remicade helps you!!! Keep us updated on how you are feeling. Glad that you are getting x-rays done and your RD is going to find the sorse of why your hips are bothering you.
Good for you I hope it gives you some relief as well. Good Job with the needles too.
Joonie, you sound like a trooper who braved the needle very well! Way to go, I'm proud of you! I am hoping you find relief soon with the remicade. I'm trying to decide between remicade and the injectibles. How did you choose? Take care. Love and hugs, juliaGlad it went well for you, Joonie!waiting to hear how you are doing today. Joonie
Thanks for the replies everyone How are you doing today?
I have a favorite nurse at Oncology, sounds so strange, but she always gets it in and doesn't wrench on my elbow to try and staighten it out. I feel weird requesting her, like saying I don't think you can do this right, but last time she was busy with another person, so the woman doing it to me, grabbed my wrist and tried to straighten my arm, before I could say no not that, so I just yelped and jerked away when she pushed down on my wrist. "Oh I forgot you can't do that."?? I'm asking for Kim from now on. My infusions takes 2 hours now, so that does get better.Yeah, mine got put in my hand. Because my elbows did not straighten enough for her, plus she was trying to make me feel not so scared of the needle. Joonie, I'm glad you got that first infusion over with. I guess the next ones will be easier and I hope you're feeling better and better every hour. Thanks Jesse!
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