Wednesday, March 26, 2014

The state of the state. Of me. Or something.

This is all about what's been going on for the last month in terms of my health. There is NOT a test later, I promise. If it bores you, please do skip it. If you're here for fiber, tune in tomorrow (?) for the gist of the spinning lesson I gave my bud M on Sunday night. (Twist and fluff and friction and balance and like that.)

I'm only writing this down for my own records, the one or two of you who are interested, and to vent, because boy howdy, the bullshit.

I guess the whole thing started last autumn. It's a combination of weather and emotional stress (it's like half my family died within a couple months of each other, WTF, you guys?). My GP was concerned because the constant pain was triggering sustained high blood pressure. I saw my pain doc, and she unenthusiastically dicked around with my meds a little bit, and sighed heavily at me. We went back and forth, annoyed each other, got nothing accomplished, and by the time I kicked the flu at the end of January, my blood pressure was back to normal and I was fed up and fuck it, we'd deal with the blood pressure when it came up again next October.

Stress makes the pain worse, and it really annoys me when the doctors who're supposed to be helping, make things worse. Especially when it's avoidable stress caused just by being an asshole.

So, end of February, the 21st, I went to see my pain doc again. My GP and I were poking around trying to find a different specialist, and did I mention fed up? I figured I'd try to force the issue. Yes, I was backing her into a corner, or trying to. Not for anything in particular, other than SOMETHING. What we were doing wasn't working. We needed to try something new.

What I got instead was a flounce that was worthy of the internet, a refusal to ever prescribe narcotics to me again, and a whole lot of attitude. Did I mention flounce? She told me she'd give me a prescription for a different topical cream to try, and I should go to the Interdisciplinary Medicine clinic. And then flounced. In a swirl of lab coat. Like a female blonde Snidely Whiplash without the mustache.

Yeah, fine, I'm bitter.

She told me "if one narcotic doesn't work, there's no point trying another". So not only am I an addict, I guess, but I'm a moron, too? I did a paper on opium while I was studying botany. From an organic biochem viewpoint, I may know more about it than she does. Remember this? Yeah. Not amusing.

Plus, if I'm an addict, why am I not getting sent to a shrink or detox or something? Not even a drug test? I mean, really. If I'm so fucked up I deserve that flounce, I should really be at a mandatory shrink appointment somewhere.

Monday (the appointment had been on a Friday), I called the Interdisciplinary clinic. I'd been asking to see someone about acupuncture and massage for four years, and the pain doctor had blown me off; now as a 'punishment', she'd sent me there. Damn right I was following up.

They'd never heard of me. Pain doc never sent the referral. (Apparently I was supposed to be crying in my beer about no more narcotics and not want anything but drugs.) Right. I talked my way into an appointment anyway. Because finally! It's two days from now, on Friday. I feel like it's a pain control amusement park. I wanna try everything, then go back and redo everything that worked.

Obviously I'm only in this for narcotics. Yeah, I'm still bitter.

Oh, and the topical cream? She never sent the prescription for that, either.

I need to write a hate letter to the HR department. I will just as soon as I can discuss this without swearing.


Laid the whole thing out for my GP. He's been awesome. He found an actual RSD specialist - the entire University of Pittsburgh Medical Center apparently has two, and the other one was an asshole I'd met before. (He walked into the exam room, first visit, stuck a temp gauge against each of my hands, told me I didn't have RSD, and walked out. There is a distinct relationship between half-assed exams and 'you don't have RSD'. Plus I'd been sitting on my hands to keep them warm, so the data was worthless, into the bargain.)

Monday I saw the new guy. He and his minion/resident spent forty minutes taking an actual history and doing an actual exam. In news that shocks no one, doc agrees it looks like RSD but wants to do some tests to be absolutely sure before he starts treating me. This is annoying but absolutely the responsible thing to do. Otherwise he listened, didn't treat me like a moron, and y'know, acted like a doctor. So that's good. Also nice, humor does not equal 'oh you must be fine'. Which is good, 'cause the more pain I'm in, the more sarcastic I get. Y'all may have noticed.

Drawback, I'm going to spend the next month getting needles stuck in me, so I'm gonna be real happy. I'll try and blog some sarcasm for y'all , I know you guys like that.

My EMG is scheduled for April 8. That means I can go see "The Winter Soldier" in the theater, the night before, to make sure my nervous system is good and fucked up.

Whee haw. Pass the chocolate.

Here, have some fiber. It's like Valium, but doesn't pop on drug tests.

Oh, and during all this? Kid and her teacher had a meltdown at school and I'm having to do meetings with the principal and other shit. Yeah.

You know, if I could have medical marijuana and unlimited Toradol without getting arrested or having kidney failure, I'd never ask for another narcotic.


Irene said...

I have been following your blog and RSD, which I also have.(left wrist broken, right hand referential pain) I wish you could see my docs. All of them have listened, been supportive and have worked to make me comfortable. My favorite Doc just left and I thought it was to Pennsylvania, but I don't know where. If you find a Dr Lewis in your travels, latch on to her and don't let go. I understand the flares with stress. But I am very lucky and the minor drugs seem to work just fine. Neurontin 2x day, tramadol as needed about once every 2weeks, and topical when I remember. PT was really good once I got with some one who actually knew more about RSD than I do. Hand specialist PT was useless! They never listened to me about the pain, although professed to treat lots of RSD patients. I know every case is unique biut my good news is the more exercise the better I feel, so I am looking forward to some intense gardening this summer. Take care and I hope things start to get better real soon with a good treatment pla.

Emily said...

Oh, oh, string of bad words here. There is nothing like having something hard to treat. Most doctors hate that. The "blame the victim" reaction is the nastiest result. Good for you for persevering.

My daughter is a narcotics addict. Very very different from people like you.

I am just back from the hospital and had a roommate for a while who had swallowed something caustic when she was 20 and ruined her digestive system. She was dealing with chronic pain (plus a liquid diet for the rest of her life) and her complaints about pain management were very like yours.
Good luck with the appointment. I would think you'll need new things to deal with this as you go.
As far as I'm concerned, you have an amazingly sunny disposition, given your situation. Oh, jeepers; good luck with the Goob's teacher too. Ugh.

Catie said...

sounds epic-ly craptastic - hope things improve soon.

Bob & Phyllis said...

wow. just wow.

Oh and acupuncture may indeed help. DH has a private practice and sees a fair amount of pain issues. He's been able to help nearly all of them, so there is a good possibility you can get some relief.

Good Luck!!

Barbara said...

That was a PAIN doc? Are you sure she wasn't a pain in the arse in the wrong office building? I'm a big fan of the flounce, just not in my medical "professionals." I use the term loosely, just because one graduates with a medical degree one is not automatically a healer, someone has to be in the bottom third of the class. Good luck with the next contestant.

Hug the Goob and "feh" on her teacher. I'm better your darling Goob is the mature one of the pair.

Galad said...

Hopefully this new doctor will make some headway. Our family is personally and professionally pretty savvy about pain management and all narcotics are not the same, particularly in how an individual reacts to them. It's unfortunate that when someone has unmanaged pain that they get labeled "drug seeking" for trying to find relief. Keeping fingers crossed that you get more answers and a good plan this time around.

Roxie said...

You have really struggled with this. Hope alternative approaches do the trick for you.

And good luck to the Goober. Surely you already knew she would break half the teachers she goes up against and make allies of the strong ones.

Cassie said...

Long time, no talk!

I feel ya on proper pain control, especially for RSD/CRPS. I went on a rant on my blog back in... November? Maybe. Not sure. It was last year. Anyways, I was pissed enough to title the rant "A is for Ability, not Addiction". (An aunt actually called me an addict at a family function. I may have gone on off on her...)

I have yet to find a doc who truly knows more about RSD/CRPS than I do. The drawback to constantly researching it in an effort to find proper treatments, I guess. Plus, the ones who have a somewhat decent knowledge base for CRPS type I (RSD) know very little about CRPS type II (Causalgia), which is what I have. Add in a severe case that adores spreading and rare complications (heart issues) and you get all sorts of fun.

I will say that if they are willing to try new things with you, I adore my Cyborg parts (SCS). Wicked fun getting to tell people I need to go charge my battery. ;) Also, I'm currently on Butrans patches- as far as extended release opiates go, it's awesome stuff because you only need to change the patches once a week. It keeps the levels in your blood nice and even.

Oh, and the supposed RSD specialist I saw while at Mayo? Decided since parts of my legs can sweat, I don't have the disease. Never mind that parts of my legs CAN'T sweat, parts can. So when I asked about those non-sweating spots, his answer? "It must be a drug side effect." I asked which one. "I don't know." /headdesk. Some docs really shouldn't be allowed to call themselves specialists at anything.

I hope you guys find something that helps you! At this point, I've tried it all, so next on my list is either a wheelchair and assistance dog, or the Neridronate (if it's brought successfully to the US).