Misery, CT

This is Kris posting using Vi’s account.

We’ve been fighting to get IVIG on Cigna for months. It first started when we were advised high dose IVIG would be very beneficial back in May, but we were told there was no way Cigna would approve. So we sought out the experts in the condition in the hope they could get Cigna to approve. After four appeals with Cigna, they couldn’t.

Somewhat as expected, Blue Cross approved it in less than 24 hours. Right from the initial pre-authorization request. LESS THAN 24 HOURS. This is incredible, but the initial jubilation has given way, because this shows we should be able to have it back home. The stress of this forced move is immense, and I don’t know now whether I can stay here to receive the treatment, or go home, where we are comfortable, where we know our doctors, where our friends are around, where we have support. And just accept my fate and slowly get worse. Only I am reminded how hard that is when I remember the feeling of my skin burning like it’s covered in napalm as it was throughout most of October .

Two nights ago Vi got dizzy, her vision changed, and she collapsed and was taken to the ER. The local hospital here in our new town is really shit. It was hopefully(?) due to exhaustion and stress, she is feeling better now. Vi has never been to the ER as long as I’ve known her. I don’t know how we can manage her getting sick if she gets worn down being out here.

This shouldn’t have happened. Why does my wife have to collapse from exhaustion and stress so I can get a treatment that can just as easily be given at home. I’m so upset by the toll this is taking on her.

She’s been my full time caregiver for a long time now, without her I literally wouldn’t eat. We’ve had social workers at hospital ask us about hospice care and the like. But she’s managed because back home we had support. We had comfort. All we needed was within walking distance. We had the distraction and comfort of friends. We had the things to look forward to like the occasional breakfasts out on the days I was up to it.

But now she’s out here without that. We both are. She’s had to manage this end of the move into our first apartment, and then four days later pack everything into a trailer on her own and move us to a new apartment two hours away.

Our first apartment we picked unseen, it’s the same property company we lived in down in San Jose and in Seattle, and we’ve always had no problem. They allow transfers between properties so that’s what we did. But the apartment was disgusting. It stank like it had water damage or something like that and we couldn’t bare staying there, every time we entered we wanted to vomit. And we can’t risk anything making me sicker.

So we looked around quickly, but anything close to Boston or a nice town is insanely expensive and beyond what we can afford on our disability budget. So without much time to wait, we wound up having to move two hours away to a run down town, with it’s abandoned factories, and nothing else within 30 minutes drive. So everything she has to do now involves that much more effort too.

I can’t imagine staying here. There is nothing around. What am I supposed to do? Back home when I was up to it I could get in my wheel chair and go two blocks in either direction to a local cafe and feel normal for a period. I could meet a friend for coffee. I could zip over to the cinema and see a movie with Travis. Vi and I could look forward to the small familiar things we could do together, the breakfast spots we’ve always gone to, things like that. These things all mean so much when you’re sick and now we don’t have them.

So do your doctors. I no longer have all my familiar doctors who know me, who could order up help when I needed it. I can’t even get my hydration IVs set up now because it’s “too complicated” of a process for the doctors here to arrange, I was told to go to the ER.

There is nothing I can go outside and do around here. Our apartment is bare and we can’t really afford to spend much furnishing it so it will stay that way. I don’t want to be stuck in a bare apartment, sick, unable to do anything but listen to the upstairs neighbor, with nothing familiar to look forward to. I’m so very stressed and upset and desperate to get home where we belong and Vi is the same way. I haven’t felt this desperate for a miracle in all my life.