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JOURNAL ENTRY: Day 37 through 42: June 19 – June 24 , 2011

June 25, 2011

Post Cytoxan Day 7 through 12
It’s been another rough week for Queenie. While her pain level has stabilized to something more “normal” (and believe me, normal pain for her would be crippling for the rest of us), she is still struggling with dizziness and a nasty case of nystagmus. She is really struggling again with basic tasks like brushing her hair and eating  & she’s also got something going on with her voice and it’s making it hard to communicate with her by phone. All of that, combined with her limited mobility and just plain being homesick, is making Queenie all kinds of anxious & sad. She’s easily upset which, if you know anything about Queenie, make her a rather “difficult” patient. It’s times like this that make me very very grateful for my job in a cubicle hivemind …. if I were a nurse I would wind up in jail, that’s for sure.

From a treatment standpoint, we’re still not sure if the Cytoxan was a good choice or not. Only an MRI can tell us if she’s has lesion growth or not . Physically, though, we’ve not seen much improvement at all – we’re not sure if that’s because this exacerbation was by far the worst one or if the Cytoxan is worsening her symptoms. For now, we’re in “wait and see” mode.

Our next challenge is working with the insurance company. Queenie only has 60 days annually of Acute Care benefit with her current insurance carrier. This benefit is officially exhausted on 7/13/11 – the problem is that the insurance company is only extending benefits a week at a time and re-evaluating Queenie each time. Their position is (and rightly so), that if she exhausts all of her Acute Care benefit NOW she won’t have any to use later should she need it. So, now we’re faced with the option of what’s officially called “Sub Acute” care. Sub Acute care is essentially a step down from Acute Care and is provided by “skilled nursing facilities”. What’s all this really mean? Nursing Home. With rehab of course, but still …. a nursing home. It’s hopefully a short term solution and, as luck would have it, we happen to have a Sub Acute facility locally that has experience with treating MS, so at the very least Queenie will be MUCH closer to home. When this is all going to happen, we’re not sure. Once again, we’re waiting and seeing. Man, am I getting tired of THAT.

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