First things first:
Cindy, tons and tons and tons of ~ma for you and your family. I'm sorry you're going through this. msbelle, I'm sorry that Mac is not communicating.
Also, happy belated birthdays and anniversaries.
Has anyone heard from Shir (or Nilly)? I don't think Shir has posted in over a week. The most recent Natter post I see from her is on May 11th, but I'm not on FB and haven't checked other threads.
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), 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.
Shir, thank you for checking in. Things are just awful.
I'm so worry that things are so terrible, Shir. I understand the out of control feeling so much. Know you and yours are in my thoughts every day.
Thank you for checking in, Shir. Constantly thinking about you both, your families, and everyone there, really.
Good to see your pixels, Shir. Stay safe!
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.
