Yesterday the visiting nurse was back and we got my meds straightened out. The rehab center had prescribed one dosage of the Lispro, while the cancer center had prescribed the same medicine at a far lower dosage. Not a good thing when it comes to insulin and the discrepancy on this as well as a few other meds has been making me a bit frantic. To add to the confusion, my glucose sensor had fallen off again after barely a week, and I was out of refills so I couldn’t monitor my glucose.
After a long conversation between her and my doctor, I now have a standardized list of meds to take. Relief!
I’m also supposed to keep a week’s worth of data on food/glucose so we can adjust dosages as needed. Paperwork is the bane of my existence.
Today I’m getting both OT and PT and possibly a bathroom refitter estimator in. I didn’t remember to write down that time and apparently didn’t do it for OT either. Looks as if once more I forgot to tap SAVE on the phone alarm clock thingy.
Last night the lift recliner was delivered. Amazon failed to tie the white glove delivery purchase to the recliner so the (very big) boxes were left on the step. I’m lucky to have wonderful neighbours. Two of them brought the boxes in, and a third assembled it. It’s fairly nice.
My only gripe is that you can’t put the foot rest up while the back remains vertical but, eh. I can now get up when I want to, although I was getting close to being able to by myself.
Still waiting on the lift BED, although I’d been getting out of bed by myself for a couple days now (if what I’m sitting on is too close to the floor, I can’t get quite enough thrust).
My beloved heart sister (@boggette) is now juggling 2 full time jobs: her own and caring for me. I’ve some other friends who are trying to arrange to care for me for short periods so she can get a break, but the majority of care is on her shoulders. The more I can do for myself, the less extra stress for her.
Onward to the day, which promises to be at least as busy as yesterday. And that was exhausting.
I should mention that thanks to all the deliveries lately, my cat is insanely happy with all the boxes to hop in and out of that also provide ambush lairs.
Hooray for recliners. Now you both have comfy lairs from which to ambush the unsuspecting!
Yaay on progress getting non-cancer meds squared away. Failure to communicate between far-flung branches of your care team will be an ongoing challenge. That’s where having somebody, e.g sis, available who can take notes while not under the influence of drugs is super useful.
The recliner isn’t as comfy as I’d hoped, but at least it lets me get up and down during the day. I’m getting a bit better control of the bladder so I haven’t needed the PureWick while downstairs the last couple of days.
Today I learned that the fat free yogurt is not also no sugar. 6-7 grams of sugar is enough to start my glucose skyrocketing.
Also that laying flat on my back in bed definitely cuts the pain, at least for short periods of time.
Yesterday I got an estimate to refit the bath. It’s close to 20,000, but I need it done. I’ll need someone else to lay new tile and paint after that useless Jacuzzi tub is removed.
I’m here. I’m always here. I was laughing at your comment about someone else cleaning up… that would be me. When I went to college for Theatre, English, and Electrical Engineering, there weren’t any classes for nursing. I’m glad you put up with me as we figure all this out! I’m also glad The Bog is so accommodating of our situation. I love you!
@Morgyn, I don’t have any specific advice (other than the stuff about ‘don’t worry, the nurses have seen it all before’ which has already been given); but just want to wish you the best possible outcome and the easiest possible ride on the way.
I don’t have anything to offer you but mental and emotional support. And I’m too far away to send you a casserole. But I hope you find comfort and your visiting nurse keeps fighting for you with all the different medical staff. Hugs from me and my cat Mercedes says you can scritch her ears.
Mostly the issue has been pure exhaustion. I’m spending a lot of time asleep which, believe it or not is almost more tiring that staying away. I find I have a small burst of energy after waking up, so if there’s something I need to do, that’s when I try to do it.
Of course, there’s far more things to deal with than I have spoons for. The hospital is dunning me, my taxes still aren’t done. I still need to put “the important information” together. It’s only scattered across 8 or 10 websites.
Yeah, chemo can really knock the stuffings out of you. At one point I walked 100 feet to the mailboxes and back to check my mail. 45 minute inadvertant nap followed.
At work they gave me a handicap parking pass for work and honestly, I need it most days.
I have to think that one of the high points of truly dread disease is thinking that as between death & taxes, death is the closer snake so for once in my adult life I can totally ignore taxes. Yaay!
My late first wife spent many months where 100 feet was a long walk. Then it was 50 feet. etc. In her case it was not a one-way trip; her energy ebbed and flowed. @Morgyn’s will doubtless be the same.
You might want to read this & talk to your care team. This guy is not a quack or nutbag, but a medical chemistry drug development researcher of high repute in his highly rarified industry. If he talks about it, it’s real, not BS. A Vaccine for Pancreatic Cancer Treatment? | Science | AAAS
Today is the only day this week I won’t be visiting the cancer clinic. Mon & Tues were blood transfusion days, yesterday was the infusion, and tomorrow there’ll be blood work and (possibly) another transfusion.
Yay for ports, boo for my inability to remember to lidocaine it before going in.
I had a couple extra spoons today so I finally got a shower.
Two falls this week. One my neighbors were able to help me get up from, the second we had to get the EMTs again. This is rapidly getting old. The first was my own damn fault, I was moving too fast with the rollator and took the corner too sharp. The second I caught my shoe sole on the door frame coming up the stairs from the garage into the house and “nope” went my knees.
Does anyone know how to get a power of attorney set up? My brother is helping with finances and wants his ass covered. I can’t blame him for that, either.
I was laughing at your comment about someone else cleaning up… that would be me. When I went to college for Theatre, English, and Electrical Engineering, there weren’t any classes for nursing. I’m glad you put up with me as we figure all this out! I’m also glad The Bog is so accommodating of our situation. 
I love you!
