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So. You know how I was all excited to get the tiny new “Remunity” pump for my Remodulin? The manufacturer, United Theraputics, promotes it as being super-convenient, easy, worry-free, etc. They are LIARS. Liars, liars, liars. Greedy liars.

The pharmacy nurse called today to set up an appointment to train me on the new system. And multiple appointments into the future before I’d be allowed to use it… which seemed odd for something “simple”. She showed up, we got started and within ten minutes I told her NOPE this isn’t going to work for me, let’s call it a day.

The problems are manifold. First, for some reason the little pre-filled medication cartridges need to be refrigerated, though it’s the very same shelf-stable medication I use in my old-style CADD MS-3 pump. Which means, no trips without bringing a cooler along. *eyeroll*

Second, they only ship ONE WEEK of medication at a time. So, every week I’d need to sit on hold with my specialty pharmacy to re-order, and then worry that UPS will have a delay and I won’t get my meds on time (which happens a lot more often than it should) and be home all day to take delivery… It might not sound like a big deal, but my stupid medication already uses up enough of my bandwidth and I don’t want to be forced to think about my horrible disease more than necessary.

And what if we went out of town? They’d need to ship to my hotel? Yeah I can’t see any problems there.

Third, the pump has no display and it DOESN’T KNOW HOW MUCH MEDICATION IT HAS IN IT. Read that again. So I would need to hope that it wouldn’t run out in the middle of the night and wake me up.

Fourth, if for some reason my medication cartridges aren’t delivered on time, I’d need to manually fill an empty cartridge, which isn’t a huge problem except that I’m not allowed to do so without first sitting on hold with the pharmacy and getting the OK from them. Please.

There’s more nonsense but those are the main issues. After I told Nurse Shelley that I was calling a halt to the whole thing, she said she totally understood and that only 25% of patients who try this new pump are happy to stick with it. That’s a pretty lousy rate, United Theraputics. Do better.

So, it’s the ol’ CADD MS-3 pump for me — which is no longer being manufactured so they just keep recycling refurbs, which I’m sure is why I’m having ever more problems with my pumps. I’m needing to swap them for “new” ones every couple months because they keep failing for one reason or another. Shelley says United Theraputics is designing a new pump to replace it, but of course they’re a goddamned greedy pharmaceutical company and they’ll only allow it to be used with name-brand Remodulin while my insurance co will only pay for the generic treprostinil.

Oh, yeah, the Remunity pump “needs” name-brand Remodulin, not the generic. Kinda funny how they released it just after the generic came out. What a coincidence, and what a convenient way to force ppl to buy the name-brand drug. At least the 25% of patients who stick with it lol.

Oh well. So be it. *shrug*

Monday and Tuesday went by so slowly, but Wednesday and Thursday absolutely flew past. Weird.

I finished the little dress! Here she is in her full outfit.

So many teeny tiny seams and hems!

Nurse Adam from my palliative care team came over for a visit today. He’s working on getting me some oxygen tanks to use if we have a power outage. He always checks to make sure my docs are following up and doing what they say they will. Such a kind fellow.

Chloe told me about an online pharmacy that sells drugs at a reasonable price (15% above cost) so I’m working on getting them to supply the drugs that my insurance company won’t cover (my rosacea cream and an allergy med that is VITAL). Seems totally legit so I’m really excited. They are CostPlusDrugs.com . Founded by Mark Cuban, billionaire who apparently has a heart and isn’t merely playing space tourist.

I finished the bodice of Doll’s first proper dress. The tiniest, fiddliest pieces you can imagine, all sewn by hand with teeny tiny seams. So much FUN. I think I will need to make a duplicate doll for myself so I can continue making clothes for Lulu’s doll after her birthday (need to custom fit everything).

Watm and Springy today. Very proud of myself for taking a small walk in the morning.

I re-drafted the bonnet pattern and made one that fits properly, though while sewing it together I thought of a way to improve the pattern even more for next time. As promised here are pics! She’s in her full set of underclothes: drawers, chemise, and petticoat.

This one shows the 1/8” tucks on her drawers. So tiny!

And here she is in her sun bonnet. I’ve cut pieces for a dress from the same scrap of ultrafine Liberty print cotton, a donation from one of my mom’s friends. I can’t afford Liberty prints! Although doll clothes are so tiny I could buy the odd 1/4 yard now and then :D

Super tired tonight but in a good way.

Forgot to take photos of Doll! Maybe tomorrow. I sewed her a sunbonnet tonight, which is a little bit small because the pattern was drafted for a doll with painted hair. I’ll redraw the pattern and make her next bonnet big enough to fit nicely over her braids.

Went to UPS this morning to ship the spider socks to mom and return yet another bad medication pump. Safeway was nearby so I hopped in to get ingredients for a creamy lemon pie I just read about, and made it when I got home. Basically lemon juice, condensed milk, and whipped cream. We haven’t tried it yet but how bad could it be? Lol.

And THEN I made a big batch of scalloped potatoes! My first time using that recipe and it turned out great! Dave was thrilled to have a lovely cheesy potato dish to eat with his dinner.

Slept nice and late, less fatigued! I sewed Doll’s petticoat, so now she has a full set of underthings. Pics tomorrow.

Got my MRI done this afternoon, easy-peasy. Only took about 20 minutes in The Machine, and Walter the Tech streamed Bach’s Goldberg Variations for me to listen to. Soon we will know if I have a pituitary tumor…

Big fatigue still. Went to fabric store for hooks-and-eyes, and finished Doll’s little drawers.

Fairly tired today but I didn’t need to go anywhere so I sat on the couch, listened to podcasts, and worked on Lulu’s doll. Got her little drawers nearly finished; just need to buy hooks and eyes for the waistband. It is so much fun to sew these tiny clothes by hand! I’m having the best time. I’ve always wanted to make a doll like this, but Em wasn’t really into dolls. Now I have the perfect excuse :D

Doc appointment in the morning (just pcp check-up), therapy at noon (my monthly FaceTime session with wonderful Suzanne), and then CRIPPLING FATIGUE for the rest of the day, ugh.

Gorgeous warm humid day. I went to Trader Joe’s and bought a load of groceries for Henry and Co, dropped them off, went BACK to Trader Joe’s and bought food for us, came home. Jayla and Freya and back from their California trip and everyone is recovering from Covid.

Had a big rest and then tidied my garden zone!

It’s small, but I can only do minimal physical stuff so it’s pretty much all I can handle and I’m very proud. Tomatoes, peas, pole beans, a zucchini, spinach, strawberries, and plenty of onions and marigolds for pest control.