I had microwave popcorn for dinner which was delicious for a minute but then made my lips and tongue feel like they were coated in grease so I stopped. Blech. Probably best to not eat the whole thing anyway but boo.
I’m still thrown by how late it’s staying light now. I think partly because of pandemic time warp and my brain is convinced it’s still around March? But I was just thinking “maybe I’ll go to bed super early tonight” and then realized it’s already 830, so while after 9pm is earlier than many, it’s not crazy early.
The last haircut I got from him (or anyone) was in August 2019 so right now I'm deciding if I'm going to get it cut for Locks of Love or similar or not.
Whoa! And your hair is very abundant!
I paid H&R Block to do my taxes and ate up most of the capital gains. But it was worth it for the peace of mind (and having someone else I could point at if anything were discovered to have been done wrong).
This is no small part of my logic as well.
I made a tots & brats casserole for dinner last night. Tots all around! (To be clear... the sausage like food item, not annoying children. This time.)
My youngest son (the one w/Crohn's) has been through a weird medical week and a half. It started with a very splotchy bruise on one of his feet. Later he developed petechial bruising on both feet (which has since spread to his calves, too.) Now he has vasculitis on his feet and lower legs. We only found this out after about 6 hours at the Children's Hospital E.R., (in the days prior, we had 3 other docs playing hot potato with him, which ended with his PCP floating MENINGITIS as a possibility).
It may be caused by his Crohn's medication (which he gets via infusion every 8 weeks and is due for an infusion this coming Thursday).
He was on IV Remicade (a biologic -- i.e. a chimera monoclonal antibody) for a little less than 2 years and it worked very well for him. He needed the surgery in 2019, because some tissue was too damaged to come back, but Remicade worked wonders with his IBD overall.
In January of this year, our insurance insisted he switch to Inflectra (which is a biosimilar of Remicade -- a biosimilar isn't a generic, there is a small difference in one protein, and nobody cares about this part, Cindy). Anyhow, our GI appealed the switch at the time to no avail.
Now we don't really know if it's the Inflectra that's caused the vasculitis, but that's a best guess. It's a rare thing, and there are more case studies on Remicade sometimes causing this thing, but that's because Remicade has been in use for yonks, and Inflectra is relatively new. C, however, hasn't had a Remicade infusion since November. He got Inflectra in both January and March.
They're both in the anti TNF class of medicines. TNF is tumor necrosis factor and it may sound bad at first blush, but for people who don't have autoimmune disorders, TNF is a cool thing. It shuts down potential cancers.
TNF does this though, via an inflammatory response. People with diseases like Crohn's have bodies that are already way too quick on the inflammatory response trigger. Basically, Crohn's disease means your own immune system attacks your digestive tract at the slightest provocation. Anti-TNFs or TNF inhibitors like Remicade and Inflectra tell it to calm the heck down. Of course, when you receive an anti-TNF, you're at a higher risk for cancers like lymphoma and what not, but you can't really walk around letting your immune system attack you from mouth to anus, just because it's a drama queen.
So, there we are. Where is there? I don't know. We're going to a dermatologist at Children's on Monday. Why a Derm, you ask? Right there with you, except C's vasculitis is in the skin (which, I mean, thank goodness it didn't attack his kidneys or his intestines, which can be a thing). He's currently using a prescription steroid ointment, and compression socks, like an 80-year-old.
We don't know if he'll be able to switch back to Remicade (1) because Blue Cross might deny it, and (2) maybe it would now cause the same problem.
We don't know if this will rule out TNF inhibitors for him overall. We don't know what that will mean for his Crohn's. We don't know anything, and by "we," I don't just mean us, but his GI and pediatrician as well.
And I have no way to sum this up, because I can't hear myself think over the sound of the forks in the garbage disposal that is my brain. (Thanks, Chidi.) So, ta-da.
Much ~ma, Cindy. I hope it gets figured out and can be resolved easily.
Thank you, -t. Sorry. I didn't see your post, before.
Cindy, I'm so sorry. I hope the doctors figure it out soon.
Scary and infuriating about the insurance company mandated change.
Wishing all the health -ma.
