I’m going through some big changes here, and not necessarily good ones. My initial version of this post was looking quite different, but things haven’t played out the way they were supposed to, and to be honest, I’m in a bit of a mess. Here’s the deal: Medicare recently made some nasty changes. Because of these changes, many people are being kicked out of hospice care who would previously have received it until the day they died. Many people, including me.

This obviously is a bad situation for anyone to be in. My biggest fear has long been living without access to any medical care. I was forced to do so for about six months once, and my condition is far worse now than it was then. That said, my doctor (who also happens to be the medical director for local hospice) recently looked me in the eye here in my bedroom and promised me he would not kick me out of hospice until another appropriate care plan was in place. He promised me he was not going to abandon me, and that I didn’t need to worry anymore about being without health care in the future. He then made a plan with a county based home health care service that involved him continuing to oversee my care while their nurses made occasional visits and carried out his orders.

This was difficult to accept, because it meant needing to pay for a lot of things that were 100% covered in hospice, either by Medicare or through donations made to the hospice organization itself. I was told the home visits would not be covered by insurance unless “skilled nursing” were required (skilled nursing includes things like IVs, pumps, and basically anything that absolutely requires a nurse to handle). I need skilled nursing because pills no longer have any effect on me (a common problem in severe ME patients due to digestive issues), but so far my doctor has been hesitant to order it. I was on a subcutaneous pump for awhile that worked great until I built resistance to the medication, but eventually the doctor took me off of it rather than continue increasing the dosage. Medications would also no longer be 100% covered, so that could get expensive fast. Also, hospice has been providing the adult diapers I need free of charge, so I would need to begin buying those as well (and trust me, they are not cheap!). But I adjusted. I reached out and found some resources to help meet the expected increase in bills, and I prepared myself for the transfer in care. It could be worse, I told myself. At least I’d still be receiving care, right?

Wrong. During what was supposed to be an enrollment visit from a county nurse, I was informed there have apparently been some huge misunderstandings between them and hospice. Far from what I was told, it turns out the county program cannot provide in home care at all unless skilled nursing is required. To make matters worse, my doctor chose to make the transfer happen on the first day of a whole week’s vacation (his, not mine, lol), so he’s not here to clear things up or find a solution. Because of this, the county refused to even enroll me in their program until they can get ahold of my doctor next week and see if he will order the skilled nursing I need (and they need to accept me into their program). It turns out the county nurses work mostly with people who have PICC lines installed – but they don’t install them themselves, and so far nobody locally has been willing to install one in a home setting. They also won’t do peripheral IVs because they need changing too often. They don’t generally work with subcutaneous pumps, but they said they could if the doctor ordered it again.

Yesterday was my last day in hospice care. This leaves me with absolutely no care at all this week. To further complicate matters, I was told yesterday that as of today, the release of information form I signed so that hospice could communicate with the county would be null and void, and I would need to sign a new one with the county if I wished hospice to be able to continue communicating information to them. But since I’m not being allowed to enroll in county care, they didn’t have me sign a release. So nobody can even talk to each other. Fun, huh?

I’m telling myself to trust my doctor right now. This probably sounds insane to many ME patients due to the frequency with which we are let down by doctors, but I really believe this doctor is a good guy. I believe he thought there was a solid care plan in place for my transfer. And I want to believe he will keep his promise to me and find a way to get me the care that I need.

Meanwhile, I continue living without any pain medications whatsoever. Right now I am experiencing near daily 10s on the pain scale – usually many times a day. This level of pain is incredibly difficult to bear. It is a level of pain that will drive a person insane. It makes rational thinking very difficult – a person experiencing this level of pain would literally cut both their arms off without anesthetic if it would simply make the pain more tolerable. It is an experience described on ME assessment sheets as a point at which being eaten alive by tigers literally couldn’t hurt any worse. It is sheer desperation. It is torture. And it needs to stop.

I don’t know what the future holds for me right now. I would be lying if I said some seriously desperate thoughts have not entered my head while fighting against these intolerably high pain levels, knowing there may not be any relief for quite awhile, if ever. But I also believe I have a doctor who genuinely cares about my well being. So I keep my hopes up that soon, hopefully very soon, he will find a way to get me an appropriate medication in a way that will work to bring my pain a bit more under control. It takes me quite awhile to get these posts written, but I promise to update everyone on the situation as soon as I possibly can once we figure out what’s in store. Once again, I want to thank everyone for sticking with me through this crazy rollercoaster ride. Here’s hoping the next rise is just around the bend. Take care.