Braised Lambchop
a nurse trying to work while suffering with chronic pain - she rambles a bit

Currently playing in iTunes: Clocks by Coldplay

Today's ramble is an update on the Mayo Clinic odyssey and a short description of what it's like to come off a whole big bunch of narcotic with no help.

First the update: We are going to Minnesota, whether we have an appointment or not, on March 20. On March 21, I'm going to show up at the Internal Medicine department and wait to be seen. This wait, at the present time, is three to five days; by the time we get there, though, it will probably be closer to seven days.

We're going without an appointment because I may never get an appointment if I depend on the waiting list. If I present there as a new patient, I'm guaranteed to be seen at the first available opportunity.

Let me give you an idea of how much this is going to cost. I'm going to have to stay in a hotel for at least ten days. The least expensive acceptable hotel is a Hampton Inn, where I can get a AAA rate of $85/night with free high-speed Internet access, breakfast, and an easy chair. With the 11% tax, it's almost $100 a night for 14 nights. Add the cost of meals and travel expenses and this is $2,000 even before the medical expenses themselves, of which my insurance will pay 50% of an unknown amount. Since this is world-class medical care, and I'm going to be seeing at least two different physicians, I'm betting that my out-of-pocket expenses will be at least $7,500.

In short, I need all the clicks and donations you can spare. If you can donate to me instead of to a political group, it would be much appreciated and well used.

Now for the experience of narcotic withdrawal, my second in four years: I've told you previously that I use a Duragesic patch for a continuous dose of pain medication, and Actiq lozenges for what's called breakthrough pain. Last week, I decided to stop taking the Actiq lozenges.

I did this for two reasons: First, because I'm sick and tired of my head being so clogged and foggy that I can't think straight. I've never had to read or listen to things four or five times to understand them, and being forced to do so by medication is something I'm not willing to accept anymore. Second, and more importantly, I want to see where my pain level is without this medication, and the only way to do that is to stop taking it.

I've spent the last six days weaning myself and I finally came completely off on Thursday afternoon. I just stayed in bed all weekend, Saturday and Sunday being the worst days. Fentanyl withdrawal is notoriously difficult - people can take weeks to feel better - but since I'm not coming completely off it I think I've been spared the truly terrifying shakes and hallucinations. I haven't been able to keep anything down since Friday, so I just rested and tried to keep my mind off the shaking. It's as if your legs want to move, and you want to dance, but there's no music and you can't stop when you want. It actually feels better to move your legs; the movement is calming rather than energizing. Withdrawal is tough to explain to someone who hasn't been through it.

Most of all, there's a feeling of dread, like if you don't get more of the drug, and soon, you're going to implode. Obviously, this withdrawal was of my own design, so I could reassure myself that the feeling was going to pass and that I'd feel better soon. The last withdrawal, in 2002, was forced upon me, and that feeling was much different. I think psychologically knowing that I'm the one in control made all the difference.

Right now I feel better than I've felt all week, and I'm not vomiting anymore, so I'm sure the worst has passed. I'll get the prescription refilled again in a couple of weeks (I disposed of the lozenges I was prescribed this month so I wouldn't be tempted to take them), so I won't have to travel without any help at all. My mind is somewhat clearer too, although not entirely where I want to be.

So, for the next few days I'm going to be a bystander, sleeping a lot, reading some, and generally letting my body recover. Sorry I didn't give more notice, but it was a sudden decision. When I've truly got a handle on just where I'm at pain-wise, I'll write more.

To sum up: We're going to Mayo on March 20, and I really, really, really need your help. Thanks in advance for helping me and my family.