Still here.

First of all I’d like to apologize for not writing these past two weeks. Life gets a little overwhelming sometimes, let alone our life is running on overwhelming as a default. Even as I write this it’s already 10 pm, I woke at 4:30 am, and got maybe 2 hours of sleep. But It’s been too long, and Bella is doing her best to increase traffic to the site, and personally I’d like to try and get as much information out as possible, I may start doing this close to daily, rather than weekly. I forget too much, or don’t remember the necessary details, as hopefully I don’t mess up too much in this post trying to cover the last two weeks.

So lets start with where I left off last time. We had just figured out Bella had a bad allergic reaction to the Lovonox. Update from that, they never changed her blood thinner, she just doesn’t take one now, and we have to monitor her pulse ox to try and make sure she doesn’t get a Pulmonary Embolism (PE/Lung Clot). Of which we’re still using the cheap one from CVS because the bedside pulse ox, along with her pump and wheelchair, are still not approved by insurance and as much as we try to push it seems to not be going anywhere. Needless to say we’ve been on our own for that, and her PICC has been irritating her since it went in, and her heart has been much worse, though the doctors say it’s fine…


We’re also still waiting on the Doctors to get the Prior authorizations correct to cover her prescriptions, since we still haven’t been able to start on the new protocol. I can’t afford the $30 a day per prescription the Pharmacy requires without coverage. Also before anyone says anything, she has Medicare and yes they’re supposed to cover antibiotics 100%, but with the long term prescription they require a Prior authorization, that the doctor has to fill out. Even with our near constant nagging, it’s taking way too long; if it even happens at all, and we’re forced to find a way to pay. It’s horrible.

Basically the last two weeks have been about 5 ER visits, beyond our control and countless doctors appointments leading nowhere. Though her neurologist did say she should fight and deserves treatment/care and we should go through Hospital Administration for her complaints on her last Admitting stay, and the trouble we’ve been having with her prescriptions. We have, many times, including recently, but it never leads anywhere. Our contact in administration no longer takes our calls, or calls us back, and we’ve even talked to someone else about that.. At this point it seems like most of them are just trying to wait her out, rather than admit fault.

Anyways, Bella has been getting hit hard by random infections/colds/sicknesses. We’ve also started to experience a new cycle of specialists. The neurologist saying to go to infectious disease, and infectious disease either dropping us or saying to go to cardiology, and cardiology saying to go to neurology…  Just more bull shit, and everyone passing the buck rather than admit her test results are correct, and she has Chronic Lyme Disease, Babesiosis, etc. To say it’s frustrating doesn’t even begin to describe the situation.


However we push on. In the past two weeks, she’s been too sick to leave bed just about every single day. Writhing in pain, unable to eat well, unable to drink well, just completely miserable. Most ER visits I had to basically carry her in, to have her find out there’s nothing they can do and they have no advice on how to help her stay stable.

On a lighter note, we are no longer actively in foreclosure… I was able to get approved for a forbearance, however the supplied information and what they based it on, they almost doubled our payment for the next year, and I have to re-apply. They didn’t include medication, utility payments, or basically anything we submitted as expenses, and decided that while we weren’t able to make payments before, we can afford to pay all but $200 of what I get monthly. Also that $200 is rounded up but I don’t feel like doing math right now for the exact amount we’d have left over. I feel like the universe is working against us at this point to make us break or something, I’m not sure anymore.

We do our best to be good people, and hope somehow that will help us, do everything the doctors say, sometimes against our better judgement, and hope to finally have some good come our way, but honestly I don’t know how much more we can handle.

I got pretty sick about a week ago. I got such a bad headache and felt so shitty, I puked just trying to go up the stairs to make Bella’s night meds. She ended up having to mix them herself since she was slightly better off than I was, and I felt like absolute shit the next few days. Bella got it the next day and has been recovering since. She’s maybe been able to get out of the house twice for a short car ride, and nothing else. Savayah somehow didn’t get it, but did get (or is continuing) an ear infection. If this new antibiotic doesn’t finally get rid of it next stop is ENT specialist and possible surgery, which we’re hoping won’t be the case. I’ve said it before, but damn we seem to be Murphy’s Law in the flesh.

The best way to describe Bella’s condition the last two weeks: She feels like her body is pumping poison. Her headaches are beyond compare. Her stomach has had multiple cysts burst with plenty of free flowing fluid in her abdomen, causing extreme pain, that no one can do anything about, and her body just has to process and absorb. Her arm has been hurting where they found the blood clots, and hasn’t gone away. It’s just a miserable, horrible existence.

I may have to continue this again as soon as I can, but for now I’m falling out. I’ll add more posts soon, Everything has been piling up. I even have to try and fix our dryer because it doesn’t heat anymore, but haven’t been able to find time to work on it with everything else going on, and the closest thing to free time I have I’m watching savayah, who I can’t leave on her own or have around the tools, parts, or other things on that side of the basement that’s usually locked so she can’t get in and hurt herself. She’s been pretty OK at the laundromat though, so until I can find a good window to do so, it’s on the back burner.


At this point most days are just trying to get through them, and trying to get things together for doctors, lawyers, and planning. Keeping Savayah as happy as possible, and working on her speech/learning, and doing our best to keep Bella out of the ER, even though it hasn’t been working to well for us lately. I’m tired, and have to go for now, but please if you can find it in your heart, donate to help us out. Maybe we can afford to get to her doctor in NY to get better assistance in treatments, and possibly afford at least one of her meds to start getting her to better. Please share far and wide, we’re constantly working twords all these problems, and they just keep coming, and we’re drowning.

Groggily yours,

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