Arthritis Warrior!!!!
The Arthritis Foundation had a lunch for its honorees on Saturday, at an Outback Steakhouse. There were about a dozen or so people there, not too big. We gathered on the patio and they had a table with lots of give away stuff like buttons and flyers.
I met the lady I spoke with on the phone. She had a very familiar voice to me and I finally realized she sounded like a teacher at a another school that I'd known. It had been driving me crazy because I couldn't tell who she reminded me of. She was very nice, and also introduced us to a gentleman who helps with the Arthritis Kid Camps, which may be something that Phoebe can do when she's bigger! He also said that Dr. B helps with those and reiterated what a great doctor she is.... which I totally already know! :)
We got to meet the other youth honoree, a boy who is 12. He was diagnosed at age 6. His mom and dad were both super nice and the mom had brought a bunch of photo albums from the Camps. They look really fun--- swimming, horse back riding, group activities. He also had a bunch of uplifting notes from counselors and peers, so they must do some sort of exchange where you get little letters from everyone. I love that.
The mom and I of course talked medications. Her son is on Remicade and doing well. She said they did two shots of Humira and then had to give up. (I really can't believe how terrifying the shot is! How can it be so bad??? It just blows my mind.) He is also still on mtx, but that is no big deal any more. They have Kaiser and get treated in Oakland. I asked if he gets sick a lot or misses school due to the immunosuppressants, and she reported actually he has been very healthy since starting everything! That was really great to hear. We exchanged contact info and I look forward to seeing her again at the walk.
There was a "kids' table" very thoughtfully set up with puzzles, mega blocks, arthritis foundation coloring books and markers. All the other patio tables were high with bar stools for seating, which was not going to work for Phoebe, so we kind of took it all over so we could eat there too and have a high chair that could reach a table. But really, the other boy was old enough to entertain himself, so really they'd put everything out for Phoebe and Cordelia. I had also packed a bunch of go-to toys (Cordelia had a tupperware of legos), but that was incredibly sweet of them to bring all that stuff.
They gave us appetizers and then there were a couple of "speakers" sharing their stories. They are also on the website, so I was kind of familiar with them too. Again, just talking about the importance of getting involved in the community and being able to benefit from the support of other people going through the same thing.
While people were talking, Phoebe was trying to upstage them with her cuteness. My mom kindly carried her around to look out at the parking lot to look at cars and birds. When they passed out some folders, they and invited Cordelia to help distribute them. That was nice! :)
They talked a bit about fundraising, and for example, one woman's company will match all of the donations brought in. That's pretty cool. Other suggestions were having a yard sale, etc. I need to email more people and try and get more people involved at school.
It's funny, it doesn't sound like many of the people, even those from the foundation are very adept at using social media. LOL! They were saying, you can use it, if you are familiar with it, but none of them really were..... Jason was joking after, well, it IS an "old person" disease. Ha ha ha! They were very excited that we were going to have shirts and pretty much went crazy for the colors, which are the arthritis foundation colors. (Which I had eventually figured out a while ago, but when I first saw the logo I hadn't put that together myself.... so even more extra points to Jonathan for thinking of that!) Maybe they were even a little surprised.... do people not make team shirts?! That was a really fun part of the Cystic Fibrosis walk, seeing how all the teams were color coordinated! Well, maybe we are just going all out! I don't like to do things by halves! 😊
Phoebe's rheumy mentioned in a message that she was going to be at a conference this weekend. In one of the facebook groups, someone posted a picture of all the pediatric rheumatologists doing a line dance! It was pretty poor quality/blurry, but sure enough, I saw her dancing away!! Interestingly, they are almost entirely women! I am so grateful to these women for caring about rheumatology AND children. There are so few of them, there needs to be more!!!!
Not sure if the link is public, but you can try to check it out. It looked really fun and hopefully they are all there learning great stuff and sharing the knowledge. :)
https://www.facebook.com/angelayoung/videos/10214021620271388/UzpfSTIzNTgyNTYwNjUyNjgwMjoxNTQ3OTkyNTUxOTc2NzYx/?sorting_setting=CHRONOLOGICAL
Phoebe was super cranky all day today (Sunday)! I hope it's just teething and the mild cold.... She didn't sleep well last night and kept waking up.
There was a "kids' table" very thoughtfully set up with puzzles, mega blocks, arthritis foundation coloring books and markers. All the other patio tables were high with bar stools for seating, which was not going to work for Phoebe, so we kind of took it all over so we could eat there too and have a high chair that could reach a table. But really, the other boy was old enough to entertain himself, so really they'd put everything out for Phoebe and Cordelia. I had also packed a bunch of go-to toys (Cordelia had a tupperware of legos), but that was incredibly sweet of them to bring all that stuff.
They gave us appetizers and then there were a couple of "speakers" sharing their stories. They are also on the website, so I was kind of familiar with them too. Again, just talking about the importance of getting involved in the community and being able to benefit from the support of other people going through the same thing.
While people were talking, Phoebe was trying to upstage them with her cuteness. My mom kindly carried her around to look out at the parking lot to look at cars and birds. When they passed out some folders, they and invited Cordelia to help distribute them. That was nice! :)
They talked a bit about fundraising, and for example, one woman's company will match all of the donations brought in. That's pretty cool. Other suggestions were having a yard sale, etc. I need to email more people and try and get more people involved at school.
It's funny, it doesn't sound like many of the people, even those from the foundation are very adept at using social media. LOL! They were saying, you can use it, if you are familiar with it, but none of them really were..... Jason was joking after, well, it IS an "old person" disease. Ha ha ha! They were very excited that we were going to have shirts and pretty much went crazy for the colors, which are the arthritis foundation colors. (Which I had eventually figured out a while ago, but when I first saw the logo I hadn't put that together myself.... so even more extra points to Jonathan for thinking of that!) Maybe they were even a little surprised.... do people not make team shirts?! That was a really fun part of the Cystic Fibrosis walk, seeing how all the teams were color coordinated! Well, maybe we are just going all out! I don't like to do things by halves! 😊
Phoebe's rheumy mentioned in a message that she was going to be at a conference this weekend. In one of the facebook groups, someone posted a picture of all the pediatric rheumatologists doing a line dance! It was pretty poor quality/blurry, but sure enough, I saw her dancing away!! Interestingly, they are almost entirely women! I am so grateful to these women for caring about rheumatology AND children. There are so few of them, there needs to be more!!!!
Not sure if the link is public, but you can try to check it out. It looked really fun and hopefully they are all there learning great stuff and sharing the knowledge. :)
https://www.facebook.com/angelayoung/videos/10214021620271388/UzpfSTIzNTgyNTYwNjUyNjgwMjoxNTQ3OTkyNTUxOTc2NzYx/?sorting_setting=CHRONOLOGICAL
Phoebe was super cranky all day today (Sunday)! I hope it's just teething and the mild cold.... She didn't sleep well last night and kept waking up.
No comments:
Post a Comment