On Tuesday, 6/7/16, I got a call from L the Blue Cross caseworker about the Isosource debacle. She proceded to tell me that Home Solutions gave me enough to last until the 10th. I try to explain that I can’t just stop taking Isosource and start the Liquid Hope, that I have to transition, and she tells me “there’s nothing in the literature we have that suggests that.” I count to 10 and explain why the two formulas are so different – one’s corn syrup, the other is real food, veggies, etc, that I am very sick and my GI tract is compromised, that I’ve been on Isosource for two years and Ensure only for a year before that, so haven’t had anything close to Liquid Hope for three years – and that I could end up in the hospital by doing what she suggests. She seems nicer than the last few times I talked to her, and even though the conversation is frustrating I think she’s going to be able to help. I get so panicked though, I always hope people don’t think I’m a psycho after phone conversations.
I got an email later in the day saying that she’s working on it, so that’s reassuring. I have to hope that she’ll be able to figure something out.
Woke up feeling really wobbly and lightheaded. I really needed to go out, prescription at CVS and I need an X-Ray to check my tube position, as I feel like it might have migrated again. I couldn’t do it though, I didn’t feel like it was safe to drive. Ugh.
On Friday, I got an email from my Blue Cross Caseworker saying that she straightened everything out and that I would get a delivery of Isosource by the end of the day, and that I’d get my Liquid Hope next week, Tuesday hopefully (even though the original agreement was the 10th, I was okay with it as long as I got the Isosource today). I couldn’t believe it! I had no idea how L got them to capitulate, but I was so relieved.
However, my joy was premature. I didn’t get my delivery and I didn’t have enough Isosource to last the weekend. I emailed L telling her that night. The next day, Saturday, I called Home Solutions to try to sort it out. The weekend coverage person had no idea about my order and was unable to send me anything over the weekend.
I couldn’t believe what was happening. How could they just let me run out of food? Luckily, I had half a case of Compleat left from my trial a few months ago, and between that and the few cartons of Isosource I had left, I made it through the weekend, even though I had to wash and reuse my last bag.
Sunday night and no Isosource left, and I don’t know when or if I’ll be getting a delivery… panic panic panic