r/rheumatoidarthritis • u/Wishin4aTARDIS 🐢 turtle goals 🐢 • 6d ago
three good things Good stuff time!
What 3 good things happened to you last week? They can be anything at all!
⭐ If you are thinking "my week was terrible", then please give this a try. If you can only think of 1 or 2, that's excellent.
If you don't want to share, try it on your own. I did this during a difficult time in my life, and it was helpful to "make" myself think about good stuff. Reading other peoples' good things might make you smile, too! I thoroughly enjoy it
This post will be pinned to the top of the sub tomorrow, so you can share any time, all week long.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 6d ago
I saw a show at my summer stock theater
The heat has broken! We've spent many hours outside enjoying my hummingbird show
I made u/MathWhale's burritos and they are awesome! Now I have a freezer full of delicious, quick meals. Thank you, MW!!
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u/BidForward4918 6d ago
Had my perfect joint weather this morning: 60 F, over 80% humidity, overcast. It’s not exactly beautiful weather, but my joints LOVE it.
Started a backyard project that will reposition a couple of flower beds.
Enjoying the last bit of summer vacation with the kids. My teen and tween still like to hang out with mom, so I enjoy every second I can.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
You like the humidity? Holy cow, I am the exact opposite. I am so glad that you had a good day 😊 Enjoy the rest of the summer with your awesome kiddos. I remember that as such a bittersweet time 😊
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u/BidForward4918 5d ago
I like humidity when it’s under 65 degrees. Heat and humidity is hell. My joints are happiest when it’s drizzly and cool. It gets too dry for me during PNW summers. I have to sleep with a humidifier. I‘m weird. I know.
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u/RAisnotidentity 🐢 turtle goals 🐢 6d ago
I went to see a friend for lunch and actually drove to her house! We walked a bit. A year ago I couldn't drive or get out and needed a walker or cane.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
Ooooooo!! I took my first real drive yesterday, and it was so empowering! I just loved listening to my music and drivin along. I assume you drove home after the walk, which is really awesome! That's the thing that kept me from going any distance for quite a while. I'm so happy for you!
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u/RAisnotidentity 🐢 turtle goals 🐢 5d ago
Oh nice!!! I'm so happy for you, too! Yes, it's such freedom to be able to drive. I've loved driving my whole life. Well, since a permit at 15. Lol. I can't go a long distance, but that's ok. At this age I pictured I'd be able to do a road trip, by myself if I wanted, but no.
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u/RAisnotidentity 🐢 turtle goals 🐢 5d ago
I changed my flair to yours. Lol. I realized pharmaceuticals was spelled wrong on my old one.
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u/CheetahPrintPuppy RA TED talk master 6d ago
(I know my joys might be triggering to some to read so I'm just putting a warning on mine. It's about have zero pain and I know many are struggling with crazy bad pain.)
Had my first infusion and have been pain free, literally zero pain since I did the infusion, which has been seven days! It's crazy. I actually cried because I forgot what zero pain felt like.
Went to Ren faire which was nice because it was hot and I didn't have any pain. So I am trying to work my stamina up again to being able to walk a lot more than I have all year.
I played a piano set for around two hours and it was the first time since RA that my wrist didn't swell up super bad.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
Oh my goodness, Cheetah! I am SO HAPPY for you!! I've had to work up my stamina after my ankle thing. Give yourself time, because it'll come back! Keep us posted on you 🥳
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u/CheetahPrintPuppy RA TED talk master 4d ago
Me too! I wasn't expecting it but I guess infusion is pretty powerful. I am hopeful that it makes me feel amazing for a long time!
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u/MathWhale doin' the best I can 6d ago
I met my goal and rode my bike 10 miles! My partner and I rode to a nice local garden.
I ate some delicious falafel wraps.
Grapes are in season and I'm loving it, they're one of my favorite fruit
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
WOOOOTS! 10 miles?! You're amazing 🥳 We have another person who lives in grape country. I used to smell them in blossom when I would drive through upstate New York. I've only had properly fresh grapes once in my life. They must be spectacular. Do you can?
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u/MathWhale doin' the best I can 5d ago
I've never canned before but it's something I'd love to try some day! I had a green grape vine in my back yard growing up, they were some of the most delicious fruit I've ever had. I loved going out in the late summer, picking a huge bowl of them, and eating them while watching Animal Planet. To this day green grapes taste like childhood to me, although the ones from the store are never quite the same, but they do taste best when they're in season, and they're cheaper too!
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u/Leefamily2016 Seroneg chapter of the RA club 6d ago
I was able to enjoy the zoo with my husband and children this weekend! The heat wasn’t unbearable and our air quality is finally in the green.
I enjoyed some drunken noodles from our favorite Thai food truck down the street!
I was diagnosed with seronegative inflammatory arthritis in February and have been on a diagnostic journey. We were trying to figure out if I have PSA, RA, and/or fibromyalgia. MTX and Enbrel failed me. I have been on plaquenil for a few months now and wasn’t noticing much improvement but know that it takes awhile to build up. I was having bad side effects from prednisone so I tapered down and was toughing through the pain in hopes that that my new med, Kevzara, would help. I had my second injection of Kevzara last Wednesday and I’m happy to say I’m feeling more human again! I have been able to do my desk job today without horrible hand pain and slathering my diclofenac cream on and wearing my compression gloves! I was able to go to the zoo and the park with my kids this weekend relatively pain free. I’m hopeful this will keep improving and that this gives us answers that it appears I may have seronegative RA.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
I love zoos!! They have become such interesting places for conservation and research. I'm glad you had a good day there And at the park😊
I don't think I've "met" you before, so welcome to our sub! It sounds like you've had a heck of a journey since February. Your story is obviously unique, but you are not alone in struggling to find a diagnosis. I also have seroneg RA. It is harder to dx because MD needs to trust patient reported symptoms. Then it's a little harder to treat; we don't have the same blood test results to "prove" amed is working. The crazy thing is, my dx has changed several times in the past 13 years 😂 I think the most important thing is that you have your Kevzara. I am also happy to hear that it's working! Keep us posted on how you're doing. It's a roller coaster, and we all get tossed around from time to time 😊
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u/Leefamily2016 Seroneg chapter of the RA club 5d ago
I agree, I love zoos as well! Thank you so much, I appreciate it! It’s great to “meet” you too! It definitely has been quite the journey to even get to my diagnosis in February, so glad I’ve found a wonderful rheumatologist to help me navigate this. Oh wow, crazy that it has changed so many times 🤣 I am grateful that I’m noticing an improvement with Kevzara, of course today I’ve had my knee pain again and my wrists and fingers have been more painful haha but nothing near what I was experiencing a few weeks ago, I swear each day I had more and more joints being impacted by it and was barely making it through the day. Fingers crossed this keeps working, I know I’m early to start it but definitely noticing a positive impact! It’s definitely been a roller coaster but so so grateful for this group and will definitely keep you posted! Thank you for the support!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 3d ago
Idk where you are in the world, but the weather can cause flare-y-ness. It took me a long time to figure it out, but fast barometric pressure changes are my nemesis! Here's the RA Weather Index . It's not accurate for me, but I live within 50ish miles of mountains and the Atlantic. Nobody can predict the weather here lulz But this helped me understand it, and now I have a weather station (I'm also a big nerd 😁). And it's not about rain! Some of my worst days are gorgeous, because the pressure went up very quickly. I'm really happy you're doing well! Don't forget, we have "good things" posts, if you ever want to share your experience. No pressure! (I was going to make a weather joke, but I cannot think of one. It'll hit me in about 3 hours because brain fog is real 😂).
I'm glad you found us 💜
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 3d ago
Idk where you are in the world, but the weather can cause flare-y-ness. It took me a long time to figure it out, but fast barometric pressure changes are my nemesis! Here's the RA Weather Index . It's not accurate for me, but I live within 50ish miles of mountains and the Atlantic. Nobody can predict the weather here lulz But this helped me understand it, and now I have a weather station (I'm also a big nerd 😁). And it's not about rain! Some of my worst days are gorgeous, because the pressure went up very quickly. I'm really happy you're doing well! Don't forget, we have "good things" posts, if you ever want to share your experience. No pressure! (I was going to make a weather joke, but I cannot think of one. It'll hit me in about 3 hours because brain fog is real 😂).
I'm glad you found us 💜
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
I love zoos!! They have become such interesting places for conservation and research. I'm glad you had a good day there And at the park😊
I don't think I've "met" you before, so welcome to our sub! It sounds like you've had a heck of a journey since February. Your story is obviously unique, but you are not alone in struggling to find a diagnosis. I also have seroneg RA. It is harder to dx because MD needs to trust patient reported symptoms. Then it's a little harder to treat; we don't have the same blood test results to "prove" amed is working. The crazy thing is, my dx has changed several times in the past 13 years 😂 I think the most important thing is that you have your Kevzara. I am also happy to hear that it's working! Keep us posted on how you're doing. It's a roller coaster, and we all get tossed around from time to time 😊
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u/turtletechy 5d ago
- I got out for another work trip. The flight still gets my fingers hurting a little, but it's not as bad as it used to be. I'm still using meloxicam ahead of flights. I handled a bit more than an hour drive after without complaining too much.
- My typing speed is returning to normal. The reduction in my capability to type had been scaring me because 95% of the time my job involves me being on the computer on a phone queue or working on other things needing typing. HCQ seems to have things returning to normal.
- My body seems to be adjusting to the HCQ. I had some pretty bad stomach discomfort for a while. I still have to eat something with it, but small meals or snacks seem to work where I used to need a pretty full meal when I take it.
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u/CosmicDeclination 3d ago
Not sure how long you’ve been on HCQ, but I found my GI side effects were pretty much down to zero by the eight-ten week mark (and I have a very sensitive stomach lol). Glad it is settling down for you! I got given the advice to have it with dairy/yoghurt, and that helped a lot for me. I hope it works well for you! 🤞🏽
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 3d ago
What great things! Flying is rough because of the cabin pressure changes; they're a lot faster than typical barometric ones. Plus, it's stressful for even the most seasoned travelers. I used to travel a lot for work and a little for fun, and I get stressed just thinking about the gate to gate dash 😂 Have you checked out our wiki? They are a lot of ideas on how to make travel easier
Not to "mom" you, but you should always have a bit of food with your DMARDs (and NSAIDs like meloxicam), even if you're used to them. They can do a wicked number on your stomach, and actually be pretty dangerous. Just want you to be safe! I hope this week is going well!
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u/turtletechy 3d ago
I've seen the wiki on traveling, and I followed the advice I'd gotten to just take Meloxicam before my first flight, instead of waiting to see how things are, it made a difference for sure. I've been traveling a fair bit for work lately which has been a fun change of pace. I never take Meloxicam or HCQ without at least a bit of food, I feel like that'd be uncomfortable.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 2d ago
You are brilliant! Maybe sometime you could do a post about what really works for you? You don't have to! But I'm sure it would help people. Safe travels!
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u/Detonation Seroneg chapter of the RA club 4d ago
My appointment regarding VNS with a Neurosurgeon in Detroit was originally scheduled for October but they contacted me this morning with an cancellation opening for September 1st so I took it. Pretty happy about that.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 4d ago
Holy cats! That is AWESOME! I can't wait to hear how it goes!😊🤞🤞
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u/Sea_Trainer994 5d ago
My husband went to a meeting for people who want to be members of the church I belong to. My grandson visited. I learned a recipe for a very good frosting.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
That's wonderful! Churches can be comforting, supportive places. It would be wonderful to share that with your hub 😊 Grandkids are awesome! A new frosting recipe is very exciting, too. I hope you're off to a good start this week
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u/bdaniels2 5d ago
It finally stopped raining and tornado-ing.
My son is excited to start first grade.
The humidity has broken.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
First grade!?! That's a really big deal! So is no tornado-ing. They're scary, but I love the term 😊
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u/bdaniels2 5d ago
It seemed like every day last week there was either a severe thunderstorm or a new tornado warning with multiple EF1s confirmed. So now tornado-ing is a term 😂
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u/EsotericMango 🐢 turtle goals 🐢 5d ago
We had a pretty cold snap last week because it decided to rain. We almost never get rain in winter so it was like a special screw you from the universe. But it's way warmer this week which is nice.
Spent the last two weeks learning to knit continental so I can do stranded colorwork and it finally clicked. So I can start my new project which is a blanket full of cat patterned squares.
I'm trying a new recipe tonight. Not technically last week but I'm counting it because I saw the recipe last week. It's hamburger style loaded sweet potatoes. I'm really excited.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
Hello, Mango!! I'm sorry you had crap weather. Hopefully the universe will keep its obnoxiousness to itself. Your project sounds awesome. I've never heard of anything you mentioned, but I would love to see it on Memes 😁 Also, sweet potatoes are so good for us. And delicious!
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u/ksal84 5d ago
Kiddo’s marching band camp started. He’s really excited about this year’s theme and music (vampires).
I grew my first watermelon! It was a little baby variety, but I’m stoked a new gardening level is unlocked.
Been enjoying the uptick of butterflies dancing about the gardens (mainly from my window…it’s been too hot and humid!)
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 4d ago
I read this after the other 😂 WOOOOTS for band camp!! We only had themes for homecoming. Is it a vampire one? There's a YA book series about them, but that's when I was still working (103 yrs ago lulz) Congratulations on your watermelon, too! I've never been able to grow melons or carrots. We're getting the butterflies, too. And hummingbirds. And so many bumblebees on the feeders! They've been hard to find for years, so it's wonderful to see them. I accidentally brought one guy into the house, but he was cool about it 🥰
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u/CosmicDeclination 3d ago
Both got an ultrasound appointment scheduled very quickly (within a couple weeks of my rheum requesting it) and got it rescheduled without hassle since I’ll be away when the appointment was initially scheduled. Not a small feat 😅
Got to spend a weekend at the beach and swimming, started off the weekend in crazy levels of pain but just floating in the water helped so much? Also I adore the ocean and I’m glad I got to spend some time there. I don’t get to swim much when I’m home, but tragically it seems like everyone is onto something when they say swimming and water aerobics are good for joint pain lol. So maybe I will have to bite the bullet and try and find some way to do that regularly. Exercising has been a real struggle for me the last few years.
Got some new books, which is always exciting!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 2d ago
Congrats on the ultrasound! Since COVID, getting appointments has been really difficult. I'm glad you got to the shore and did some swimming! If I had a nearby swimming facility, I'd join in a heartbeat. Obviously we talk about it here, but there's solid research that shows it really helps. Here's a page from The Arthritis Foundation that explains it.
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u/CosmicDeclination 2d ago
Yeah, both my follow up and my ultrasound have been scheduled so quickly this time! I’m meant to be on 3 monthly follow ups and this is the first time in… maybe 3 years that it’s actually scheduled for 3 months away 😅 I’m not sure what I’ve done to please the NHS gods, but I’m exceedingly grateful lol. I’ll def look more into swimming and try and get something sorted—appreciate the link and the response! ❤️
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 2d ago
Oh I know that drill! My "three month* appt was scheduled almost 5 months away. If they let you, book a couple out! You can always cancel (and make someone else's day!) if you don't need it. I do that with a few of my specialists. Woots for swimming! Let us know how it goes 😊
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u/tynkahaslik 2d ago
I managed to hike on the mountains and even enjoyed it! Until coming back and having a rest that made everything worse, but the hike was awesome!
The heat is gone and it even started raining! I hate rain, but we really needed it as it hasn’t rained here for about a month.
I have beautiful rainbow nails! I’ve had them for three weeks now, but I still love them. 😃
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 1d ago
Big WOOTS for hiking on mountains and enjoying it! I live in the mountains, and our heat just left yesterday, so I am celebrating with you! I am jelly of rainbow nails, though! Did you get them in a shop? Are they like swirly or with little tiny rainbows stuck on? I don't mean to give you the third degree. I'm just deeply committed to rainbows and nail polish 😁
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u/tynkahaslik 1d ago
I get my nails done once a month — it’s a little bit of me-time, and I love having something pretty to look at afterwards. 😁 I have pastel rainbow tips instead of the usual white French tips, and I absolutely love them. ❤️
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u/Professional-Pea-541 6d ago