Today's appt w/the Pain God

I saw my Pain Man today. My Pain God, aka PMP/Pain Management Physician, is someone I am very thankful for. And no it's not because he tries to help my pain levels down just enough where I don't consider offing myself. It's because of his candor, complete honesty, and willingness to admit when things are over his head. He sticks with me through it all. He is the one who told me a few weeks ago about having "Weird-ass diseases," and that "your situation is what we call in medical terms, a bitch."

The truth is hard, but it is better than these ignorant doctors who tell patients they'll be fine if they just do something nice for themselves, like dying their hair.

We did our meds discussion, as usual. I'm keeping the Dilaudid where it's at, taking it at the same time as the Zanaflex. Wean off the anti-seizure med, slowly of course, so I don't actually cause them.

Then he asked how I was handling all of this, as well as DH. He wondered if we'd like to see a counselor trained in our situation. I politely denied.

He wished me well for the surgery being done in less a than a month but at the same time he doesn't have high hopes. He didn't have a specific reason other than the fact so much else has gone wrong. Everything that can, has.

So, that's why it was a little hard. I didn't ever want to have this talk with him, but at the same time I'm glad I've got a local doctor pulling for me here, and not looking at me like a bug like all the rest in this town.

"Weird-Ass Diseases" and Mike Rowe

I had my appointment with my pain man today. He is wonderful, very compassionate and honest. First and foremost he wanted to know what happened with my trip to the neurosurgeons in New York. I told him he was right about the EMG test the local hospital did being completely wrong; I said NY redid it, and strongly suspected Thoracic Outlet. He immediately went, "Oh, no no no, you don't have Thoracic Outlet. There are two kinds of it. There's functional, and true. Functional, it's fine and people don't have to do anything. With true, it's really rare and there's a problem with the artery and diminished pulse in the arm."

I looked at him and pointed and went, "THAT'S the one!"

His jaw hit the floor. He said I HAD to be kidding. I told him about last week's appointment with the cardiothoracic surgeon and not being diminished in the arm but have complete and total loss of pulse, Doppler confirmed, the vascular doc and chest CT.

True to his nature--honest, blunt, but always willing to stick with his patients--he just shook his head and said he was just shocked I had this, that "lightning struck" me or something, that he wanted to check his books because although Chiari is fairly common, a "TRUE" (arterial) TO is very rare and he's sure there is no documentation of a patient having both combined.

My favorite quote of today though is when he said this was going down in the "Weird-Ass Diseases" collection.

Sigh. I was given a stack of prescriptions, some pain, some anti-seizure; an order to check my liver function because of all the stuff I have been taking for so long. I'll do the liver panel tomorrow. He's adding (the painkiller) Dilaudid a few times a day to take at the same time as the Zanaflex, a titration schedule to get off Topamax after the last couple years, a titration schedule to add in (anti-seizure med) Depakote. The Topamax will take a couple of months as I'm on such a high dose and I have insurance issues, and the Depakote will take 3 weeks. I plugged in the titration schedules on my PDA because one look at all the varying info, changing every few days, and my brain about had a spasm. I'm just glad at least my other meds stayed the same. I really needed that painkiller change though. Fingers crossed for pain improvement.

Tonight my show is on, Dirty Jobs. I pretty much spend my days baby-sitting my recliner. I read a lot, and help newly diagnosed patients who are sent my way online, but as for the quiet time, the only thing on tv I watch is Dirty Jobs. It's the first show I have watched since Quantum Leap went off the air--ha! Ok, I watched an episode of FutureWeapons this year but all of my friends know it's because my dear brother was on it! You can't beat that! Dirty Jobs though, Mike Rowe just gets me in stitches, laughing until I can't laugh any more and my cheeks hurt all night. In a life where laughs can be few and far between, I take great joy in Mike's sense of humor and new shows on Tuesday night on Discovery Channel (and of course I can't miss daily reruns, no matter how often I've seen them).

Pain as an understatement. DD's sleep study #2.

It's been a horrid night. I had a Chiari headache this morning but thought I'd be able to get it under control. Nicole came over so we could go across the street for our neighbor's Pampered Chef party at 1. I took a few meds and they kicked in quickly. Within about 90 minutes it had rebounded pretty badly.

I went home and reclined for about 30 minutes. I got up suddenly and crawled into bed. I didn't realize I never said anything to my husband, kids, or J until DH came in to see what happened. Next thing I knew, a few hours had gone by. I came out to the recliner again being beaten with a sledgehammer, needing to focus on my speech to get my words out right. I hit OxyContin and after an hour there was still no effect so I added Zanaflex. I can feel a little bit of warmth and tingling from the combination right now, a slight bit of relief but good grief. Getting hit with a sledgehammer would be a good distraction about now.

Distractions. That's what I've been trying to do. Distract myself.

My 5 year old's second sleep study to determine how to get her oxygen levels under control is set for the night of October 3rd. I'm so glad we're finally getting close for some relief for her after all these years. We also had her 504 plan worked on at school with the teacher, behavior specialist, and school principal. It went really well and hopefully she'll have a much better second quarter now that the first one is wrapping up.

Here's to the hope that Sunday will be a much brighter day than today.