I picked up Edward’s new prescriptions. I dropped off a bunch of stuff at Goodwill. (Are the drop-off lines still surprisingly long in your area? We waited about 20 minutes, with something like eight cars ahead of us. Before All This, there would be mayyyyybe one car ahead of me when I dropped stuff off.) I went to the liquor store. I went to the grocery store and got enough extra for us to coast for awhile if necessary. I have acquired enough of the essential Thanksgiving ingredients (stuffing mix, cranberry sauce, pumpkin, a frozen turkey breast, potatoes) that I could put together a decent Thanksgiving without going to the store again, if I had to. Tomorrow is the U.S. presidential election, and yesterday a parade of cars covered in Tr*mp flags and signs drove honking and yelling through our town, and apparently a lot of other towns/cities experienced the same thing. It didn’t come across as campaigning; it came across as threatening.
Our furnace is old and acting wonky, so we had to have someone in the house again. (So far during the pandemic we have had to have the water heater replaced and a faucet/pipe replaced.) Paul had to ask the worker to wear a mask (previous visitors have put on masks when they saw Paul at the door wearing one, but this guy didn’t take that cue), which is so frustrating at this point, when it feels as if EVERYONE should be wearing masks just automatically.
I’ve had to go TWICE into Target in the last week, both times for prescriptions. I wish they would include prescriptions in their Drive-Up service, but so far they don’t, or at least our Target doesn’t. The first time, I felt VERY ANTSY about it: I hadn’t been inside a Target since before lockdown. I had to talk myself through it a little: it’s no different than the grocery store, I will be in and out in less than ten minutes, etc. While I was there, I checked for my usual cleaning sprays and for Clorox wipes, but there were none, so that was a little disappointing: I’d been thinking that if I had to go inside ANYway, at least I could get the things they don’t offer for Drive-Up or shipping. But no.
A week later, I had to go in again, for another prescription—this is a little frustrating because these are both long-term medications for Edward, and now they will always be refilling a few days off from each other. I will have to remember to go pick them up after getting the refill call about the SECOND medication. Anyway, so then I was going into Target AGAIN, but at least that time they did have small containers of Clorox wipes, limit 1 per customer. The pharmacy clerk remarked on my find and asked if there were any left, saying she was going to zip over and get a canister on her break.
I don’t know if it’s interesting to discuss the prescriptions. Edward has been on Remicade for his Crohn’s disease, getting infusions every 7 weeks. (Did you already know that “an infusion” means getting the medication by IV? I did not know that until Edward started on Remicade. It takes a few hours.) His most recent MRI and colonoscopy/endoscopy, combined with the bloodwork he gets done at each infusion, and also his failure to gain weight, all together indicated that the Remicade was not doing enough to suppress inflammation. He’s already on the highest dose of Remicade per infusion, but there was still room to increase the frequency of the infusions, so they did that: he’ll go every 5 weeks now. They also added a support medication: methotrexate, which is a pill (or rather, four pills) he’ll take once a week. And then when the hospital pharmacist called to discuss the methotrexate, she said he should also be taking prescription-strength folic acid, because the methotrexate “chews it up,” so that was the prescription I had to go back for.
So. Tomorrow is the election. Tomorrow we will not know the answer we’re waiting for, but we will know more than we know today.
Hi, just wondering if Edward’s doctors have considered Humira? I have a friend who is starting it soon.
The pharmacy in my Target is a CVS. I think all of them are, but if yours is not, I apologize. But they can and will work some sort of magic to sync up prescriptions that fill close together for the same person. They did that for me with two of mine. Also, they offer free delivery of prescriptions in my town. I haven’t tried it, because so far every prescription has come due at time when I needed something from Target anyway, but perhaps that is an option for you?
My husband is taking a bunch of stuff to Goodwill today. :) So maybe we’re all anxiously cleaning out closets ahead of the election?
Our Target/CVS has an option to ship to your home. My friend uses it and loves it for all of her kids’ meds. I winder if your Target has that too?
I use Target pharmacy for my allergy/asthma prescriptions. Some prescriptions are ineligible for home delivery. I’ve also run into problems with my mail carrier putting the package in the wrong mailbox. I think it’s a know how well local delivery does with packages thing.
Much love to Edward. Every body is different and figuring out this process is so hard and sometimes discouraging. I am so very much on your side.
We had the Trump parade too, on the large street perpendicular to ours, and all our neighborhood kids had a blast going outside, masked, at a safe distance, shouting “Boooooooo!” and laughing.
My son (12 yrs old) gets Remicade infusions for Crohn’s. (I also was unaware that infusion meant meds by IV… I got it mixed up with transfusion.) He’s gone every 6 weeks for the past 4 years. So far I think it works ok. He never seems to be completely symptom free. His GI doctor has mentioned methotrexate in the past, but hasn’t put him on it yet. I’ll be interested to see if it helps Edward.
A guy came to fix my water heater a few weeks ago without a mask and I was (and kind of still am) so angry about it. I asked him to wear one and he said he didn’t have one. I told him I had a whole box of disposables and he was welcome to one (and that he wouldn’t be welcome inside without one). Magically he remembered the one he had in his truck after that. Why ANYONE would let an unmasked STRANGER in their house (especially ones whose job it is to go inside other people’s houses) is beyond me. What’s especially funny to me is that the company I called had a bunch of stuff on their website about how their workers were all “clean cut” and how you’d feel safe having them in your home. Ha!
I have used a small locally owned business many many times for interior/exterior window washing and holiday light decorations and high chandelier cleanings. Well, they showed up unmasked with no intentions of wearing them and didn’t wear the ones I provided. The owner also sat at my dining table doing…paperwork??? unmasked. I left all windows open behind them and sprayed copious amounts of Lysol in the areas they left – all as I walked around my own home MASKED. Therefore, they are no longer a company I will use or recommend. This was weeks ago and I’m still beyond pissed.
That is horrible. I’m so angry for you, too.
I would be so angry and heartsick!
This is so unacceptable! I am furious on your behalf, that they totally disregarded your wishes. I love to give business to small local companies, and I don’t know if you would be up for it-but would you consider calling and letting them know how you feel? Even weeks later (which often times, is what it takes for things to work themselves out for me) maybe you could call and say “here is what happened, this is what was unacceptable to me.”. I know many people aren’t comfortable with confrontation, but what helps me, if I feel like I’ve been heard. I’m more of the head on type-which suits me but I know is not for other people. As a woman, and I don’t know if you are a woman, HL- but we’ve been so conditioned not to make a fuss, that sometimes I feel like we lose our voice.
And am I horrible that I wish you would have sprayed that owner right in the face with the Lysol?? Probably, but the NERVE!
Thinking of you. I know we have put together a whole series of donations because, well, we’re home and we’re anxious. I phonebank a lot to ease the anxiety, but clearing out closets helps as well.
The Trump parades have very much felt threatening, and they haven’t been anywhere near me (yet), unless you count the DC Beltway (which is near me, but is not ON MY BLOCK).
I am so mad that this is our reality. I am so mad that we need to prepare for civil unrest following a lawful presidential election. I am so mad.
I’m really glad to hear that Edward’s doctors are working on figuring out better solutions.
And YAY for Clorox wipes. That should be the LEAST a person should expect after entering a Target These Days.
I am so, so ready to “know more than we know today” already.
Meanwhile, I am waiting for a new book I ordered that is out for delivery today, and yesterday I bought half-priced Halloween candy and (seriously) a Bugs Bunny dvd set. So tomorrow night, I can pretend to be a kid who has no cares!
I am trying to remain calm and focus on work and family and all of that but underlying every waking hour is a low-level voice dropping constant F bombs. It’s making me anxious all the time so I don’t deal well with any other stress and I’m so tired and angry and at my wits end.
Moderately related: Oldest has decided he’d like to take up the piano – we have a piano but it hasn’t been tuned in decades so I looked on our neighborhood website and found a highly recommended piano tuner and scheduled a tuning. After we’d already agreed on a time and date the person asked me if I wanted her to wear a mask because she “is already immune.” Um, what?? I said a mask is definitely required and then after thinking about it for awhile, I cancelled the tuning. I am just not in a mental place to deal with all of that on top of everything.
I saw the parade of cars with Trump flags near my house yesterday too! Mostly big pick up trucks, all honking continuously and being very disruptive. I can’t imagine how anyone could put a positive spin on that event. To me it was obviously trying to intimidate people.
Just a quick note to say I don’t think you need prescription folic acid. I was on methotrexate six pills once a week. they did give me a prescription for the folic acid but when I asked my rheumatologist if I could take over the counter and ensure I was getting the same or close to the same dosage she said yes.
The prescription thing is very annoying (and I have dealt with that before) – I hope you can get them to sync the prescriptions up somehow.
I do not know if this would be useful for someone out there who wants Actual Actions They Can Take, but in case so, here is one of the other blogs I read: https://www.jennifermurch.com/2020/11/holdtheline2020.html
I hope the Remicade frequency increase helps a lot! I’d also note that many (most? maybe even all?) autoimmune things are, uh, reasonably responsive to stress, so this may be a temporary need rather than a forever thing, provided some of the sources of stress go away. Admittedly: it’ll probably still be a while before the Sources of Stress get definitively evicted and things start to get cleaned up. But I know I was perturbed at needing additional layers of medication – “oh no! the condition is less controlled! I’m getting sicker and we’re running out of options!” etc. – and then realized: oh. Yes. Right. Pandemic+election+life, instead of just life. Normally I can get by with X medication only, when I’m under a, say, medium-housecat-sized stress load. But chuck a Stress Hippo on top for an extended period of time, and yes, we need X and Y and Z now to be even baseline functional, *but* once the Stress Hippo goes away, then, after a bit of lag time (the body sometimes needs space + rest to un-crunch itself) it will probably work fine to go back to X medication only or reduce dosage.
If you were not perturbed by the need for additional medication, never mind, though. I was substantially unnerved by it in my case, though, so I thought it might be helpful to note: worsening symptoms are reasonably likely to be at least partly due to increased ambient stress, and will probably be assisted by a decreased stress load, which we hope will happen relatively soon (I mean: okay: fine: realistically, we’re hoping for some decrease soon, followed by a larger decrease sometime in January, plus however long it takes to clean up the pandemic. But still: not forever? Probably?).
Also! Congrats on getting disinfectant wipes!!!
I WAS perturbed/fretful, and in fact had deleted a whole hand-wringy paragraph as being Too Boring For Others, so I am very glad to read this encouraging comment!
Yay! I’m so glad! And yes, seriously, it is taking me three (I forgot one that was added on in April) additional medications to get function up to a still-substantially-worse-than-normal-but-at-least-tolerable-most-days baseline, because: stress: it does things, especially body inflammatory things. (it also amps up pain response) (and, if you’ve got nausea or diarrhea, stress ratchets both of those up to an amazing degree, too.) And also I have prior experience with it getting worse with stress and then having symptoms go down again after stress is resolved (some of the symptoms reduce faster than others, though, and there’s a little bit of lag time for all of them, usually). (my thing is not Crohn’s, but I’m pretty sure Crohn’s is one of the especially stress-reactive things?)
I totally grant that this is not at all helpful from the “fixing it” point of view unless there are good individual stress management/reduction practices he can tap into (I’m doing deep breathing and stuff; it’s only a drop in the bucket but it *is* a Drop and it is In The Bucket, so. ;-) )(happy to share my deep-breathing gif if that would be helpful at all), and we don’t have good control over national stress outside of things like managing our news intake (which is more feasible for some individuals, and within some households, than others) and possibly taking actions which make us feel less helpless for those whose stress is reduced by “at least I am doing what I can” things, *but* we seriously hope the general national/international/local stressors will be reduced (as soon as possible? please?), and then once the stress goes down, the body’s internal flipping out about stress usually does have a bit of lag time (varying with length and intensity of stress), but will *also* go down, and then hey, we can control symptoms with less medication again! And party like it’s 1999 except with no worries about Y2K bugs! Or something. :-)
(also: that would, obviously, not have been Too Boring for me. :-) )(hope things improve for you all Very Soon, and sending non-contagious internet hugs to you)
Add me to KC as another data point for stress increasing medication needs for autoimmune-type things. I have RA and while I am used to a certain amount of mutability in my meds, I’ve definitely needed higher doses of one and additions of others just to stay at baseline this year. It’s the elephant in the room level of stress happening (pandemic, election, ALL THE THINGS)- even if I don’t feel particularly stressed out at one particular moment (which, hah!), my body is sensing the elephant at all times and is reacting in its own way. Hopefully once the elephant starts shrinking, baseline stress and corresponding autoimmune responses will begin going down as well…
If you wanted to do a chatty post tomorrow I bet a lot of your readers would be happy to come engage multiple times through the day. Discussions of favorite Halloween candies or Thanksgiving recipes, or something equally not on topic for the day. Just if you’re needing more distraction…
yes please! :)
Or Christmas gift ideas in the comments?
I recommend listening to today’s NYT’s podcast The Daily. They gave three scenarios with civil unrest being the unlikeliest. They also said we might know tomorrow. If Biden clearly wins Florida, the election will be his and that will happen early. If Trump wins the election, that means the polling is even more off than last time which is also unlikely. It left me more cautiously optimistic than I have been so far.
Sorry you had to go into Target! I haven’t been since the pandemic. I get prescriptions at CVS and have them mailed. They won’t mail all medications though. I’ve heard our big Target is always crowded but there’s a mini one they opened near a college that’s usually empty. My friend likened going to the big one to playing a video game where you have to constantly dodge people.
I also would love a chatty, distraction thread tomorrow!
Thanks for the tip about The Daily episode. I immediately pulled it up to listen to while making a big pot of soup, and I feel *so* soothed by the realistic assessment…and the soup making.
SWISTLE! I keep meaning to comment. My husband has a coworker with Crohn’s. He is on Humira (I have no idea the difference), but his doctor told him studies are showing that even though he has Crohn’s and considered himself in a risk category, something about Humira is actually helping Crohn’s patients recover faster and better from Covid.
I do not know any more specifics than this, but maybe you could ask Edward’s doctor if he’s read any such thing or has any suggestions. I’m not in a medical field/have no further knowledge, but when my husband said that I wanted to remember to tell you for your baby!
I hope you don’t consider this ass-vice. I had never heard such a thing and just though maybe it would help you. All the best.
I am glad you mentioned it, because Humira is likely the next step if Remicade + methotrexate doesn’t do the trick—and knowing it might be a good plan to switch to it ANYWAY will be extremely heartening.
Oh my goodness, yes to the folic acid. Methotrexate gave me horrendous mouth ulcers, because my rheumatologist didn’t bother to give me the folic acid from the get go.
When I was a girl in the 90s living in Indonesia during elections, there would be parades of honking trucks with flags full of people shouting for us to pick their candidate which is a normal occurrence then every election cycle. It was scary and often escalated into violence. Indonesia was a young democracy dealing with a lot growing pains. I have moved since then, so not sure if this still happens, probably, things get volatile quickly there.
I find it surreal that this is happening today in the USA. Just beyond imagining.
My medium sized city has a Facebook group called “city name masked/unmasked” where the members write in short posts about where they have been or who they have hired and whether or not they are using masks. I have gotten good recommendations and shared recommendations for a piano tuner, electrician, etc. this way. It’s nice because it takes a lot of the unknown out of it. Might be worth looking into!