So facebook is censoring my posts, so i can no longer share any of this. They mark it as spam, not sure if because of asshole people or because their new algorithms blocking anything that goes against the main stream opinions on vaccines, Lyme, medical professions, or whatever. So I guess I’ll just have to hope people can still see this without self promotion. Super fun stuff.
Anyways, Bella’s infusion pharmacy dropped her. Might have been partially my fault, i got fed up and started yelling at the pharmacist and director because theu we’re refusing to send her medication, and asking about other aspects of her care. Her medication was ordered, prior authorization approved, and the pharmacist “needed more information” in order to send it out. It was about her treatment plan from her doctor. Now getting the doctors office and the pharmacy on the same page and talking took 3 weeks. Theu kept saying neither we’re contacting/responding, and I don’t care who was lying to me, I got fed up. Im realizing as I’m writing, i may have already said this part in my last update, but oh well it needs restated. So the medication had been ordered and approved for 3 weeks. It’s all i was asking for them to send. Because down the line, 2 more meds were going to be added, the pharmacy would not send my wife her medication. So we wouldn’t have to keep paying out of pocket. The director even said that legally they can send it. I don’t know about you, but we’ve never been denied a medication because the pharmacist didn’t want too. Also to note, i didn’t “lose it” until they finally talked to the doctor and when i called back they still needed more clarification… Why not ask everything while the doctor is on the phone? So i stopped letting them know any more info, that i wanted her meds, and i want to make formal complaints on everyone involved. So they dropped her. Not that they we’re doing their job anyways.
So this really came to bite us in the ass, because they have also been busy as a company, and have bought/absorbed 2 or 3 other home infusion companies in our area… So guess who cant get a new home infusion pharmacy, us…
Cut to a few days later, doctors appointment. Her PCM, to be exact, so we can try to figure out next steps. For some reason, he now has reservations about her treatment plan. He was pretty contradictory, saying it’s not helping, but we we’re never able to even start it. Even bringing up “Right to try” and re-iterating all the reasons he agreed to try the plan in the first place. He even lost his cool for a second. In the end, he’s going to talk to Bella’s functional med doctor, her infectious disease doctor, and let her keep on her current meds for the time being, likely because he doesn’t want to be liable for her going into complete autonomic and cognitive decline. Which was proven on 2 separate occasions, and with a placebo, and through so much pain and suffering, just so they could try to say it was in her head… Guess what, it’s not. It’s a disease, that is hard to treat, and requires a long term regimen.
For those of you who have been saying Bella needs a shrink, she’s seen them. Every time a doctor gets stumped, because it cant possibly be Lyme and Babesia, they call for psych. Psych has continuously said she’s fine, she’s just sick (as in virus/bacteria).
So now we don’t know where to go, or what to do. Soon enough we’ll run out of our reserve supplies if we cant find a new pharmacy. Her treatment plan is now delayed more than it was before, and we may need to start over again, somewhere else, unless we can pay the doctors who can/will help, but we can barely get by as is, let alone paying a doctor out of pocket plus the meds…
We’re scared she may not get better anymore. We don’t know what to do next, and I cant even share our story anymore. We’ve faced nothing but opposition, nothing but denial, nothing but hardship. To be left with “I don’t know”. No one can think of what could be causing any of this, they’ve all tested everything else it could be with no answers. The only tests coming up positive are for Lyme, babesia, and co infections, but that cant possibly be it, because then they’d all be wrong…
I don’t know what to do, we’re scared. Without her supplies she’s a huge infection risk, let alone her body shuts down, seizes, and forces her into a catatonic state without her meds. We’re searching hard for a new pharmacy, but it’s not as easy as going to the corner CVS. As much as we’d love that, they cant do IV supplies.
Right now we’re at a stand still. Constantly on verge of going to the ER even when they cant help, but it’s too much to handle on our own, and Unfortunatly that’s where we are… On our own, to figure it out. The only doctor who wants to help can’t, and the rest are unsure or don’t believe it could be what it is, and no amount of positive testing or arguments seem to be able to change their minds. We’re left with i don’t know as their answer.
We refuse to accept that, and will push on. Thanks for reading, that’s all i have for now, too tired and hurt to go on. However I’ll keep updating as much as i can. For those of you who read, thank you from the bottom of my heart, if ask for you to share, but social media marks this site as spam now.
Until next time, with love,