I thought I would check in with this group and see how we are doing? It has been about a month since we had some activity in this chat subgroup. I hope folks are doing well.
I had an awful flare around about June 20 or so. It lasted 4 days plus some tail off. Except for my hands I am pretty much back to normal. (well I always say normal is pretty far out there for me, but not medically) Anyway I hope folks check in.
Terrie how was Canada day for you this year? I have not exchanged email with you in bit, are you hanging in there? If anyone has some great RA friendly food feel free to post them in the July 4 summer food discussion. Particularity easy to make foods that save hands? While it says July 4, it really means summer, so if you are inclined look for that discussion it has turned into something kind of fun to be part of. We even have a member who says Lobstah is her summer food of choice. Oh my goodness I do love Lobstah and Watermelon. LOL
Hey Rick, I'm glad you are bouncing out of your flare up. I've been fighting a flare since my last infusion of Remicade, June 13th. I don't think the infusion did anything for me. I didn't get my usual "boost", just seems like I stayed in a rut and ached. And we are getting a lot of rain in TX, but I can't complain, hopefully the rain showers will keep the hurricanes away.
My next infusion is this Friday the 11th and I'll ask the nurse if they've been playing with my dosage since I'm still losing weight (as you know Remicade is weight based). Plus with the diabetes diagnosis they may have cut my steroid booster shot in my IV.
I get to see the new PA (yay, not)...by the time I get accustomed to one he or she leaves and I get a new one and my doctor does research so unless I'm in a major flare I don't see in but once in a blue moon. But I'm definitely asking for the antibody tests and referral to an endo.
I hope everyone else is doing well and enjoying the summer.
Eucritta, so sorry to hear about your elbow. Good luck with the shot. BTW, how does your RA handle travel? "Uncle Arthur" (my RA) hates air travel, driving is hard, but with multiple stops I can deal with it. I've never done train travel and would love to try it.
Kate that is so difficult. When I took Remicaide it was a great drug until it was not. I mean it gave out it was over. I was good and about 2 seconds later it was over. I was on the 30 day day and my weight was steady so my dose was steady. But the tolerance kicked in and it was over. I hope that is not the case for you. Let us know.
How funny I also have Uncle Arthur visit. He is unwelcome at my house. Well of course none of my uncles are welcome at our house, Uncle Artur or Arthur stops by and we want him gone ASAP.
I do so love to fly. I suppose it is the young boy in me. But I hate airports. The endless dragging of baggage through the airport is torture. I can never seem to be comfortable. Atlanta is the worst.
I have not tried trains in ages. I would sure love to take a nice train trip. Chicago to Seattle to San Fransisco to Chicago via Flagstaff AZ, Taos and Albuquerque NM. Wow what a great trip. That sounds like 3 weeks of a pretty good time.
Oh yes, Atlanta's airport is a bear, even before the TSA enforcement. I probably wouldn't mind flying if I could do first-class in really comfortable seats, but I've always been squeezed even in the aisle seats.
One of these days, I'm going to treat myself to a train trip up the west coast.
One of my former bosses wants me to take a cruise, but with all the bad press about cruise ships.
No, Uncle Arthur doesn't take "no" for an answer. :-)
I knwo poor Sheryl will not get on a cruise anymore. We went once and had a nice time, but that was the one and only I get ehr to go. I think the conga line might have done my future chances in. LOL
rick
hey i looked good with that funny hat and holding that woman's hips in the conga line? LOL rick
I went from Chicago to Taos NM and back from Denver to Chicago as a kid. I loved doing it and always thought you knwo i want to do it again. I have never gotten Sheryl on a train but after she retires in August I am hoping she will give it a whirl.
I bet Rick...I can imagine you in the conga line. I think I'd go stir crazy after a while--water and more water. The only cruise I wouldn't mind going on is the one to Alaska...I think that would be beautiful to see the land and mountains. But then again, I have bad luck and would probably be the one to get sick--patient "zero". :-(
Hi Rick, Kate and Eucritta!! :) Good to hear about you all and it seems like we are all in a not so great state the last month or so. That's not good! Summer should be for FUN not for pain and fatigue.
Anyways, I was doing okay again for a few weeks. I forgot how Nice it felt. Then about 3 days ago, I had severe pain in every joint in my body. Tossing and turning all night. I may have slept for 1 hour total. My elbows, fingers and knees were really inflamed in particular, oh and hips. On top of that I had a bad chill during the night, so I asked Phil to lower the cold machine. :D He felt my tummy and forehead and said it wasn't the a/c, I was burning up. Wonderful! Oh well, that's RA.
Yes, we had a Good Canada Day. Love the activities, concerts, food, fireworks, etc. Canada is now 147 years old. Its pension should kick in soon. :D We also had a Fun 4th of July due to a Family Member having their Birthday on that day. Of course, someone tells them every year that they should live in the US to get their Birthday off. LOL! Thanks for asking Rick. :)
Sorry that you are having an extended flare Kate. Gee whiz, hopefully the Remicade will work better for you this time around.
It never ceases to amaze me how little we can do when even one or two joints are flaring. Frustrating for sure. The steroid shot should make you feel better soon Eucritta. Good Luck with that.
HA! Please do keep up your sense of humour. Unfortunately, I've run out of experimental drugs. Good luck with all that you have to try yet. I'm feeling better now. Thank you! :)
We have a new person on the site who is self identified with RA. LauraLin is form Tulsa OK and I have invited her to join our little subgroup. If you get the opportunity stop by and welcome her to TUDiabetes. I hate to see anyone with RA, but at least we can let her know there are more of us around. Thanks ................rick
