Hey hey - it’s Friday! This week flew by since I was traveling for part of it. Here is how the week shaped up!
A book I am reading this week is ‘Wavewalker’ by Suzanne Heywood. It’s my book club’s July read. It’s a memoir about a family’s around-the-world sailing adventure in the 1970s. I’m only a couple of chapters in and it’s clear there is some willful neglect of their children, plus the author’s note at the beginning made it clear that this is not a happy story, so it should be an interesting book.
The high of my week was feeling good about how my work trip went. I hadn’t traveled with this sales rep before and he has a reputation for being very good at his job. He was one of my former’s colleague’s favorite people to travel with so I had a feeling he’d be fun to spend time with. He asked me to come back in October so I must have done ok!
The low of my week was: continuing to deal with this stupid RA flare. My doctor reviewed the MRI and said it appears to be a flare. She doesn’t know why it’s not responding to the injections and oral steroids so the next course of action is to see a radiologist who can do an imaging-guided injection so they can more precisely target the impacted area of the joint. But the earliest I could get an appointment is August 1st!! I plan to call every couple of days to see if they have any cancellations. Hopefully they don’t get sick of hearing from me. I am so tired of dealing with this flare. I really hope my infusions prevent flares like this from happening again. Theoretically the infusions should help with this flare but I think the flare is so acute that even the infusions can’t remedy the flare.
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| The boys played My First Orchard Game (the best pre-K game ever!) pretty much independently! |
How was your week?
17 comments:
GAHHH to the stubborn flare :( I was really hoping the infusion would be magic for you (I don't have a ton of clinical experience with RA/JIA, but I've seen cases in kids where really bad Crohn's/UC got so much better quickly with various infusions). I hope you are able to move up that appointment. Just call them daily asking about cancellations. Eventually they will probably find SOMETHING or be so tired of the daily call that they will make up a slot :)
I agree with SHU - the squeaky wheel gets an appointment before August 1st! I'm so sorry that the stupid flare is hanging on.
Wavemaker sounds interesting. I just started Margo's Got Money Troubles and it is sooooooooooooooooooooooo good.
I know that feeling of "damnit I packed workout clothes and I've got all night in this hotel with nothing to do so the workout is happening" but still not wanting to work out. I finally hit burnout with the 30/3/12 workout so I'll probably dip my toe into some running attempts. Though I think I still have running burnout...hey I'm not going to sit on the couch for very long, I'll find something to do for fitness.
Hubs and I started watching the Ashley Madison documentary, so that plus a wedding will be what we're doing this weekend;-)
OMG THE FLARE!!! Why will it not go away. I'm so sorry Lisa, that really sucks. It must be also just mentally and emotionally depleting, dealing with this whole thing. I sure hope that the injections do prevent such a thing from happening again. It's too much!!!
I have been watching The Bear, only the first episode of season 3 though. I'll probably watch an episode tonight. I thought that episode was a snore, honestly, so I hope things pick up.
My kids are on a road trip starting today! By themselves and a friend! Just imagine, one day your kids will be driving on the highway by themselves, without a care in the world, and you'll be left with an empty house! One day, Lisa, it will happen! I am here to tell you, it will happen!
Another physician here. I definitely agree with SHU. This is the time to be the squeaky wheel. If you call daily they will find something.
Well, I'm envious of your running! I've been off of running all week, but did get a treatment on my calf yesterday which I'm hoping will help. And, I hope you can get that next injection before August 1st!!! That is super frustrating.
Sounds like you have a fun weekend planned- 90s and humid is better than rain, right? I just read Nicole's comment above- I bet it's hilarious to imagine Paul and Taco driving off by themselves on a roadtrip, right???
I am so sorry you continue to struggle with this flare. I am glad it wasn't an infection though. From personal experience, I 100% agree that calling regularly works. It makes a difference!
I haven't watched any season of The Bear but I've seen it publicized in so many places. I wonder if I'd like it...?
Yes, keep calling!! Stupid flare...
Reading: my Moroccan book, "In the Country of Others" 75% done; next "The Origins of You" a non-fiction about breaking family patterns - I think I really need to examine my childhood but at my own pace. Otherwise, it's a LOT.
Watching: I watched quite a few documentaries this week. All of them tragic.
One was about the hospital that only sees undocumented people in CA, another was about various ways to die in America, another was about the class divide in West Chelsea, NYC, and the last one, "Take care of Maya" was about child abuse and how hospitals treat child abuse when it is not abuse but they think it is.
Anywho, heavy, heavy stuff.
so sorry that the infusion is not working, you had high hope for it to work. it's frustrating that even your doctor doesn't know what's going on. it adds more stress which might not be good for dealing with it.
I haven't heard about the bear, will check it out. I watched the regime on my flight to the US and really like it.
my week was great, just got back home. while exhausted, really happy how the trip went.
I like the Bear too, but haven't started the new ones yet. I'm so glad your trip went well. Not so glad about the flare. Yes, sounds like time for another opinion/specialist. Have you thought about Mayo or is everything you need right at hand?
That book sounds super interesting, I’ve now reserved it at the library. Sorry to hear your RA flare is still so bad, so frustrating the infusions didn’t help, I really hope they can get you an earlier appointment.
So awesome that the boys played a board game together independently, I don’t think mine are quite there yet- not sure O would get the turn taking but maybe I’m underestimating him.
So frustrating about your flare! I'm sorry it's such an ongoing process.
I watched a bit of the first season of Bear, and then I just watched one episode of the new season - my Husband is watching it and since I don't always choose to watch tv in the evenings (plus I'm working many evenings) he often goes ahead and watches things without me. I was very confused by the one episode of this new season that I watched - it was completely different - plot wise and stylistically - than the bits that I saw the first season.
We've played that Orchard game at a friends' house before - it is so beautifully crafted!
Gah, I can't believe you're STILL dealing with this stupid flare. It must feel so defeating that nothing is working. I hope you can get an appointment before August 1st. That's too far away! It reminds me of how long I'm waiting to get my CPAP for sleep apnea. I'm still weeks away from that appointment and it's so frustrating!
My comment attempt in the car on the way home from Louisville got an error message, so here I am remembering to come back and comment from my laptop. First of all, the flare. That's gotta be so annoying. I'm sorry it has been lingering for so long. Hoping they get you in sooner and that they find a way to manage it.
Why have I not heard of the My First Orchard Game? I will have an incredibly young crowd this year, but when I have older kids I think I should add it to my daycare. Love the pic of the boys playing together.
I keep hearing about the Bear show. So many people are into it. Coach and I don't do much TV, but I feel like I should start a list so we know what to put on when we are ready. A mom that was in Louisville with us was watching Your Honor, a Netflix show. She was unable to put her phone down because it was so good.
Well, last week started off not so great. The Louisville chapter was so much fun though. I'm home now and doing the stuff I need to accomplish before getting everything ready to drive to South Carolina for more b-ball. This trip includes Coach, me, the two little girls, and Curly. I'll do as much meal prep as I can for this trip to keep things simple while we're there. I slept 9 hours last night, or a little more, so I'm ready for family therapy this week and all the other stuff.
I am clad the MRI was not super concerning but UGH. I hope, too, that this flare abates spooner rather than later. Adorable picture! We are doing Hacks before The Bear-- excited season 3 is out so fast!
This is J (Julie)
We really enjoyed The Bear! We watched the whole thing, so here we are with no Bear to watch. Sad. We’re watching House of the Dragon on HBO, because my daughter is obsessed with Game of Thrones. ALSO due to her, I am watching the new season of The Bachelorette. On my own? I’m watching reruns of the Great British Baking Show. So comforting.
I’m so sorry about the never-ending flair! That is some serious BS. I hope you get relief SOON. I am glad the MRI came back OK, and that you are able to function through it, exercise and work and all of that. Hang in there.
I had my first flair 10 years ago in August, it started in one toe. I’ve been better for a long time now, which is a relief, and I don’t ever want another flair. I was happy this week, my doctor wanted an X-ray of my hands and feet to look for joint damage, and they came back showing none. YAY!
I'm so glad the work trip went well! It's a good feeling knowing that you made a good impression! I hope the RA flare is under control now that it's been a few weeks!
Stupid flare. I bet you're right, though - it was too far along, and feeding on its own inflammation, to be corrected by the infusion. Let's hope that a baseline level of anti-inflammatory drug helps. You do so much, despite being in so much pain. I am in awe. <3
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