Thanks for checking in, Shir. You and Nilly have been on my mind a lot with recent events.
The hoarding folks came over this morning for what was supposed to be the final cleanout of the rest of the basement, and it turns out that in working up the initial estimate, they didn't include the funky area under the stairs and around the washer/dryer/stationary tub. So that will have to be a separate job that they'll come back later for (maybe next week), which is fine by us. We just want it all taken care of.
Well, I have a dress for the wedding on Saturday. I do need a different bra for it. And some nice, supportive sandals, but... progress!
Good for getting it all taken care of.
Teppy, you and Tim are kicking clutter's butt. I've gone from proud of you to envious. Go you two!
Thank you. We're... umm, fine? (for some values of fine). Nilly, her kids and her husband are in a safe-ish area. I'm in a bit less safe-ish area, but still an area that is much safer than others (I just sleep in clothing that will allow me to take shelter in the stairwell with other neighbors, if needed. And I'm alert and listening for sirens. And cancelling plans to stay as safe as possible). Nilly and I both have family and friends that are in much more dangerous areas and we are worried about them. I think that seeing all this happening and being able to do so very little about it is the worst part. I do what I can (among other things, I publicly declared that my apartment and the empty room in it are open to anyone who need to get away from a more violent area for a few days),
Shir, I'm so glad you checked in and that you and Nilly remain okay thus far. I'm holding a good thought for both of you, your families and friends, and praying for true peace.
but ceasefire depends on things and people that are out of my control. There's so much mending that needs to be done here, in all sorts of ways. The good news is that there is enough work for anyone who wants to do something to help in some way. The bad news is that it's heartbreaking and beyond frustrating to wait and see the destruction that is being done in our name, knowing that this helps nothing and no one.
You touched on something I keep thinking about. All the normal Israeli and Palestinian people who just want to live their lives in peace and freedom with dignity are at the mercy of systems and people who want to retain and/or gain power. I am so sorry all of this is going on.
***
C's situation is not resolved. An RN who is clinical access manager from the hospital called this a.m. and said now BC/BS wants to refuse (but hasn't yet) both the biologic that worked well for him for the better part of two years (Remicade, i.e. infliximab), and the biosimilar that caused problems after two treatments (Inflectra, i.e. infliximab-dyyb), and instead, move him to one of two other biosimilars (Avsola, i.e. infliximab-axxq) or Renflexis (infliximab-abda).
The RN asked us to call BC/BS, talk to our case manager, and have our case manager call her. When we called, there was no case manager for C. DH had to hang on hold for 15 minutes while they assigned one, and then when he called her, he got her voice mail.
The whole thing is outrageous. The initial switch in January from Remicade to Inflectra was a non-medical switch. Non-medical switches shouldn't be done to Crohn's patients in the first place, because often/eventually medicines that once worked well for them stop working.
Now we need a medical switch, back to a proven-for-C drug, and they want to play Russian roulette with other biosimilars.
I don't even have a way to sum this all up, because my mind is just spinning.
Cindy - I want to smash people on your behalf. awful.
In goodish news, Mac texted me. nothing substantial, but contact.
Teppy, you and Tim are kicking clutter's butt. I've gone from proud of you to envious. Go you two!
100%
Cindy, I am angry and outraged on your behalf. It is so completely heartless the way crucial medical decisions are made. I am glad he has his parents to fight the battles. Too many people don't have an advocate.
Cindy - I want to smash people on your behalf. awful.
Thank you, msbelle. I left the BC/BS case manager a second voice mail (DH called the first time). My um...recording time expired while I was laying everything out for her.
In goodish news, Mac texted me. nothing substantial, but contact.
Contact is good. I'm keeping you both in my heart. It is very difficult to parent young adults, particularly those who think they've got it figured when they don't.
Cindy, I am angry and outraged on your behalf. It is so completely heartless the way crucial medical decisions are made. I am glad he has his parents to fight the battles. Too many people don't have an advocate.
Thank you, Laura. C is 21, so he handles all the usual stuff surrounding his treatment, but stress is known to exacerbate Crohn's, so when something this frustrating comes up, we take over. It's still a little too much for him (it's a little much for US too).
Good lord, Cindy. No case manager? That is just absurd. The whole thing makes no sense at all.
Cindy, this is ridiculous! I am so angry on your behalf.
now BC/BS wants to refuse (but hasn't yet) both the biologic that worked well for him for the better part of two years (Remicade, i.e. infliximab), and the biosimilar that caused problems after two treatments (Inflectra, i.e. infliximab-dyyb), and instead, move him to one of two other biosimilars (Avsola, i.e. infliximab-axxq) or Renflexis (infliximab-abda).
This honestly feels like BC/BS is trying to punish you for daring to complain.
That's exactly how I feel, Teppy. Like they're doubling down. The thing is, their double-down makes no sense.
They're saying he can't stay on Inflectra because he "had a reaction" (that's not really what this is -- it's an adverse effect that came on about 6 weeks post-infusion), and they're saying he can't go back on the Remicade, because he "had a reaction to Inflectra," but Inflectra, Avsola, and Renflexis are all effing infliximab biosimilars. I feel like I woke up in cuckoo land.
Also? I haven't even talked to BC/BS yet, so it's not like I had a chance to alienate them yet. And our GI is this young, sweet, brilliant Korean doctor, who is as polite and reasonable as the day is long. He's a saint, so I can't imagine he did. I have never seen him put a foot wrong.
In the letter I sent BC/BS yesterday (with *our* appeal, to which they still haven't responded), I was polite to the point of sweetness, and even worded it like they were already my allies, instead of my sworn enemies.
(They are SO MY SWORN ENEMIES!)
