just a note stating i'm not dead. lol. been really sick STILL. leftovers from the flu & and relapse.
but i did want to write a little glimpse of hope for all out there on Remicade or starting it: had the 5th infusion...and i didn't need to use ANY dilaudid for a little over 2 weeks! haven't been able to do that for over 7 years, so it goes to show that the Remicade is at least helping with the RA pain...i mean, i still have pretty bad joint pain, but it's almost controlable with rest & tylenol.
that or the joints are not that bad because i have been on my posterior for the last 3 weeks well whatever...lol.
Hi all! I'm here as well. Happy New Year! We didn't do much out of the home for the holidays....I did have family visiting and just hung out with the kids and played a bunch of new games (of course, the house is a disaster now and now I'm too in pain from missing medication (long story),rain, and having gained 10 pounds in the past month to do much about it!)
Yalinda, I started Azulphidine 2-3 months ago and it made me feel AWFUL as well. I finally cut the dosage in 1/2 and have been taking that ever since. In the last week, I've brought 1/2 of that missing 1/2 back in at night time.....so far so good, but I have been getting mild headaches during the day again. I think I won't go any higher in dose for a while until I'm used to this new dose.
Erin, I hope your health improves soon!
writing in to give an update.
hasn't been pretty the past several weeks.
i have gone backwards since december 20th....blah.
last wednesday my knees failed me. don't know what happened but they just swelled up bigtime, and the pain was unbearable. had to go back on dilaudid & steroids. knees got to the point where i couldn't walk at all. sucks.
still can't put weight on the right knee. legs still swollen.
so been on bedrest ever since the 20th. have a pcp appt monday. somethings wrong...have an irky feeling. stool incontinence too! ewwww. it's humiliating. to put icing on the cake...i gained in a matter of a week...20 pounds. went from 90 tp 110...blah.
feel like a pool of jello. funny how everyone says oh once you gain weight you'll get your strength back. what???? this is the worst i've felt in a long time. and the weight just makes my legs hurt worse & sooner when standing. so even though i was way underweight...it was better on my joints. i'm not happy.
anywhoo...i'm p.o.'d about being on steroids, not sleeping and going through some excrutiating leg pain.
on top of being sick...i don't feel like myself either.
had to vent..thanx for listening.
(((Erin))). Thanks for the update. You've had such a rough time of it for as long as I've known you. I simply have no idea what to say! I pray that your doctors get your RA and crohn's under control soon. Come vent here whenever you need to.
Hi everyone! Welcome back! After the holiday break and school starting, we decided to pull the kids out of school for a few days and take a long camping trip. It was coooollld. I was a baby the first day complaining about my achy joints. I improved as it warmed up a tad, but the kids got nasty about how "slow mom walks" the whole time we were gone and all that jazz. My husband was apparently trying to make a 'funny' to them a few times and they are just too young to understand as they took it way too far and it ticked me off. I finally told the kids today that (once again) I don't find that funny AND if they don't want me to go on trips with them any more then that is fine with me because when we are on rocky ground and mommy's feet hurt, walking slow is the only kind of walking I can do. Next time, I'll just stay home while they go camping. That quieted them up pretty quickly. Am I a terrible mom?
ERIN - you sound like you are living a steroid nightmare!!!! I'm sooo sorry to hear what you are going through!!! That stuff messes with your brain big time and the weight you've gained is NOT good weight - no wonder it hurts to walk or move! Your body sounds like it is swollen to the max! (Valley Girl talk!) Feel better soon. Keep us up to date when you can!
Take care everyone!
Ducky yea!!!!!! missed you!
yeah, camama...i'm in agony, trapped in hell called my body. i hate it. 1st time ina long time where i actually feel very uncomfortable in my own skin. feeling extremely unattractive.
i don't know...i do much better with less weight. especially on my legs. 110 is way to much for me to carry even though my old weight of 95 was very underweight (for 5'5). i can't keep this on...i need crutched to walk & can barely stand to brush my teeth.
so hey it's sunday morning! i'm ready for bed. didn't sleep yet. however there were good films on last nite.
this really stinks. i'm supposed to see Barry Manilow wednesday night & i don't wanna miss it.
i'm not the complainer...so we know this is really bad when all i do is bit** about this crap. times like this i really wish i was approved for disability already...it's pretty awful.
this too shall pass this too shall pass this too shall pass.
here's to a peaceful sunday for all.
We're home too! Of course, I don't have a paying job at the moment!
We watched the Chargers fumble themselves out of the playoffs today. Though I was born in New England, my husband is an avid Chargers fan - so, our support went to San Diego today, though we were sadly disappointed.
As for camping, I do live in Southern California and though the nights did get down in the 20's (it's been that low here too!), the days (with the exception of that first day) went up in the mid-high 60's, and I think even the low 70's one day. Not to mention - when I was pregnant with my 1st, after years of bad feet and joint issues, I said, "forget it - I'm not sleeping on the ground anymore. I can't get up and down and we need a heater for the baby!" City girl at her best!
Yalinda, I never heard of that play.
Erin, are you feeling any better today? I hope so!