I saw my new pain doctor today, and he loaded me down with Lidoderm, Cymbalta, and Butrans (I already had Dalmane, Ambien, Restoril, Neurontin, Dilaudid, oxycodone, Vicodin, Demerol, Fentanyl, Requip, and probably a few more that slip my mind at the moment). He also referred me for acupuncture, hypnotherapy, physical therapy, biofeedback, and a half dozen other therapies, and finished off by telling me to consider a TENS unit and a lidocaine infusion (I obviously looked wealthy). All this plus a new diagnosis. No, it’s not CRPD like my internist said, and it’s not even syringomyelia like my last pain specialist said, and it’s hardly a complete mystery like my surgical neurologist said. Oh, no, it’s CPS (central pain syndrome, whatever that means—I rarely even Google diagnoses anymore). I damn near fell on the floor laughing when he said that. God, I could diagnosis myself by closing my eyes, opening a medical encyclopedia, and pointing at a disease, so what the hell do I need these overpaid morons for? Oh, drugs. That’s it. I need them for drugs, man.
I’m going to rant—or should I say “continue ranting”? The son of bitch had me piss in a goddamn cup so he could fucking test me for drugs (“I told you what I’m taking,” I said. “Don’t take it personally,” he said). He even insisted that I bring all my medications so he could look at the bottles, but he wasn’t content with just looking at them; he counted the pills—or rather his nurse did. I knew that a drug test awaited me before I went in, so I hated him from the start, and tortured myself about whether to go at all since I didn’t really expect any good to come of it anyway (you lose faith after your 30th doctor). I agonized right up until the last minute, at which time I concluded that I would put up with his drug test shit until the first of the year when my insurance cycle starts over, and I have to start paying through the nose again. The whole time I was there, I kept wanting to slap him silly. If I were a hair’s breadth less stable, I would have too. Although I’m not entirely unsympathetic to a doctor's need to protect himself in the event of a lawsuit, I doubt that it sets well with many people to be forced to prove they’re not lying.
After I left his office, I went to another doctor’s office for an Orthovisc shot in the knee. He missed the joint three times, and kept having to jab that long old needle around. (Why, yes, thank you, it did hurt about as bad as it sounds like it would). I’m glad that I’m able to handle pain as well as I am. I’ve been so near absolute panic and/or despair so many times that I’ve lost count, yet I persist in believing that I handle pain better than most people. I’m probably a fool for thinking this, but it somehow helps me to maintain that illusion, if it be an illusion.
I’ve all but stopped smoking the medical marijuana (I’m still eating it in small amounts). After I poisoned myself (see August 8), it just never felt the same. When I smoke it now, the first thing that happens is that everything that makes me anxious or unhappy hits me at once and is multiplied by a factor of ten; and the second thing that happens is that I become a complete idiot. I can still write—I’m ripped right now in childish rebellion against the fact that the pain specialist told me not to mix pot with one of my new drugs—and it even makes me write when I wouldn’t otherwise want to, and about things I wouldn’t otherwise write about. Like now. Peggy’s off to New England for two weeks, and I had just as soon be working at a job that I started three days ago after postponing it for years for fear the pain would become unbearable. That job is painting the laundry room and building a new shelf unit for it. The work entails filling holes, moving heavy things, scrubbing the walls and ceiling with trisodium phosphate, cleaning up the mess, and then applying three coats of paint. Six years ago, it would have been a small job, but now it’s killing me. It’s also making me very happy because I do love manual labor.
With Peggy gone, I let Bonnie the dog and Brewsky the cat sleep wherever they please instead of locking them away like we usually do. Surprisingly, Brewsky has taken to sleeping with me in my twin bed. Two dudes together, you might say. I feel badly that Bonnie can’t join us, but it would be a bit much for me even if it wouldn’t invite trouble between her and Brewsky—it would also mean a move to Peggy’s double bed.
So, there you have it; I’m busy, so I’m not visiting blogs, and I wouldn’t be writing in one now if I hadn’t smoked that pot, because I really want to get this job done as a surprise for Peggy who after forty years still hasn’t learned that I’m dumb enough to do such a thing.
Off they Go
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Good luck Boulder, Julian and Poof. My bathroom buddies for the last ten
days.From Quartzville road. All of the first five I trapped there are now
in h...
33 comments:
You must be ratting from all those pills, Snow and then to have to justify another. It's a weird world. A great rant.
this doctor: a physisatrist, snow?
this all sounds awful. i makes me wonder what the heck kind of bad medical care you have although i know that seems to be stating the obvious. but why? this drives the case manager in me crazy. no reason why you can't have one good doctor who you trust.
i wish you a slow and enjoyable laundry room re-do. take your time.
love
kj
Oh Snow. I am hurting for you. I really, really hope things start to improve. And of course you are painting the laundry and moving heavy things and generally testing your limits. And you can't tell me that Peggy will be surprised. Or perhaps you can, but I don't believe you.
Argh!!!! Have you considered finding another doctor? Your medication list is wayyyy scary to me.
This is an addition to my earlier comment. I know how much of a perfectionist you are about your writing. You have repeated the paragraph beginning 'After I left his office' And bye the bye that did sound excruciating.
In the paragraph beginning 'I've all but stopped smoking..' you have repreated the sentence beginning 'Peggy's off to New England'
Elisabeth said: You must be ratting from all those pills
Elisabeth, is this an Aussieism, or did you mean to say "ranting from all those pills"?
KJ! Right now I have two other doctors, and my feeling for them approaches love despite the tenor of this post. However, I do recognize their limitations only too well. I don't stay with doctors I don't like. I might, as with this one--use them for a short while, but I'm out of there as soon as I can be. I'll also point out the fact that compulsory drug tests are commonplace in the field of pain management. Of course, they say that it's to protect the patient--in case he's lying, I presume.
Child said: Oh Snow. I am hurting for you.
Oh, don't do that. You've got enough problems, kiddo, and I'm fine. I really am. I rarely--almost never--experience the kind of terror and self-pity that I once did. Sure, I bitch sometimes, but then I feel better, so don't worry about me, okay?
Child, I found that error you mentioned, but I very, extremely, crucially, and devoutly appreciate you for pointing it out. I've never before written a post and put it online immediately.
Kay said: Have you considered finding another doctor? Your medication list is wayyyy scary to me.
I have three doctors right now, Kay. In my experience, 90% of what doctors do is to prescribe drugs, that is unless they're surgeons in which case they prescribe surgery. I share your concern, but have come to the realization that I have to look out of myself no matter who my doctor is. You might remember the large dose of Fentanyl that my internist prescribed. I don't know for sure that it would have killed me or destroyed my liver or kidneys, but it was clearly an overdose, yet I've been with that doctor for twenty years, trust him a whole lot, and wouldn't dream of leaving him.
I suspect Elisabeth meant rattling.
Of course I hurt for you (it reminds me I am not alone). Nonetheless your comment suggests that this post may have elements of 'give us this day our daily whinge', which I think is perfectly reasonable given the pain you are in.
Oh, Snow! Still trying to keep the entire medical profession employed, single-handedly? Sigh!
Since I got my new pain doc, things have been going remarkably well. I'm making a significant recovery.
I wish the same for you, but, well, um, ah, I kinda wonder about the people who are "helping" you. Truth is that some people's help we can do without.
Blessings and Bear hugs, if any of that will help.
I've been rather busy myself lately. Sorry about the stupid docs. I have so little faith in them! Take it easy with the laundry room!
Oh my dear, I can sense you are out of it, particularly as in your post you repeat two paragraphs in a row (about the knee shots) and write about Peggy being gone right after each other two times as well.;))
I hope you get all done that you wish before her return.;))
xoxo
Sorry, Snow. I meant 'rattling' - a typo.
Zuzana said: I can sense you are out of it, particularly as in your post you repeat two paragraphs in a row (about the knee shots) and write about Peggy being gone right after each other two times as well.;))
With the editing assistance of my readers, I WILL get this post cleaned up! Thank you, Zuzana.
I agree with the others, Snow -- you do sound out of it. I'm sure it is temporary.
My very favorite non-diagnosis diagnosis (I may have mentioned it to you before) occurs when a person complains of pain in the chest and goes to see a doctor, who promptly diagnoses the condition as angina pectoris. I have known more than one person who was very pleased to have found a doctor who made that particular diagnosis.
P.S., Angina pectoris is Latin for pain in the chest.
I cannot make sense out of handing the doctor my honest list of meds, complete with dosage, then they want to SEE the bottles. If I was taking something I shouldn't - don't they realize I'd leave THAT bottle at home?
I left my last doctor thisfast. I had him for two visits and without talking about my health, he ordered heart tests, brain scans, colonoscopy....(I'd already TOLD him that my colon had been surgically removed!)
I'm not there for tests. Whatever they find, there's just another drug for it that doesn't work or I'm allergic to.
I'm back with my PA. (Physician Assistant) a problem that is very common in Florida.
They can't put you in the hospital, take care of you IN the hospital, or get test results because they're not recognized by the hospital as "physicians".
But they can prescribe whatever you need and do so - while adding common sense and compassion.
They TRY to help. Unlike a "real" doctor who isn't there to "help", he's there to "control".
Snow, I have fantastic photos of the woodworking I used to do. The furniture I made. The life I had, even while IN PAIN, was constructive and creative.
But now (hey, if I got older - SO DID YOU) our bodies just don't function through the pain like they did when we were younger. Body parts are giving out and giving up.
You and I are fighting not to give up and out, and therein lies the path to injury.
I want Peggy to find a newly renovated room too. I just don't want her to find you incapacitated in the middle of the floor.
Seriously, I feel your pain, Snow, and I hate that you had to be subject to such humiliation, but welcome to my world.
(The pain doctor here swears that it's state law that he piss tests his patients at EVERY visit...my mother has gone to a pain doctor..same state...and has never had a piss test in 10 years!) I called in my medicines last month and they made me come in to the office and see the incompetent new PA for no reason. (She kept saying to me, "Why can't you work?" like a gestapo!!) The state of pain management in this country is totally fucked up and seriously broken. The doctors are NOT looking after the patient at all.
I hope you don't overdo while Peggy is gone. Can't you get someone to help you move the heavy stuff? But I understand you wanting to accomplish something. I feel the same, but dare not act on it for fear of hurting my back further. Take care and hang in there! xo
You a brave person Snow. I'm not sure I could continue with all that. I sometimes think the emotional crap is more than I can handle.
Rob-Bear said: Blessings and Bear hugs, if any of that will help.
Why, thank you, Rob-Bear!
Rhymes with Plague said: you do sound out of it. I'm sure it is temporary.
Rhymes, without making a big deal out of what comparatively little pain I suffer and the relatively few drugs I take for it, I'm still frustrated by how difficult it is to make people understand what it's like to ALWAYS hurt and to ALWAYS be juggling my prescriptions in order to get the most relief with the least risk. Another thing that I simply can't communicate is how hard it is to deal with the medical system--and America's ridiculous insurance system--ALL THE TIME. Readers often assume that I simply need to find new doctors who can offer accurate diagnoses as well as treatments that are safe yet effective. When I read this, I simply think to myself that they just don't have a clue how many doctors I've had, or how ineffective, dangerous, and degrading modern medicine (American medicine anyway) is in regard to a great many problems. Also, chronic pain is one of the harder problems to treat because it's poorly understood; there aren't many really great drugs for it; and many of the drugs that there are tend to be abused which makes doctors all weirded-out about prescribing them, partly due to the fact that the government has the cruel habit of busting conscientious doctors for (supposedly) over prescribing narcotics. This country's war on drugs is as expensive, insane, and doomed to failure as its other wars.
Beau's Mom said: If I was taking something I shouldn't - don't they realize I'd leave THAT bottle at home?
I know. I even thought of taking most of the pills out of the bottles in case he did count them, and I was in such a state of anger, distrust, and outright paranoia before I even laid eyes on the man that I wondered if he would try to confiscate some of my drugs--he would have been REAL sorry had he tried that. The truth is that when the doctor who you go to for help and who you want to trust, treats you like an addict, you become self-protective like an addict. I don't even take a lot of narcotics anymore, but I sure as hell hoard a lot of narcotics simply because I never know when my supply will be cut off.
Mad Mind said: I'm not sure I could continue with all that.
My thought in going to this doctor was to see what he offered, and then get my internist to prescribe it. Other than the two pain patches and a new diagnosis that I would have to have an MRI of my brain and spinal cord to verify, he didn't offer me anything that I didn't already know about.
Marion, when you told me about required piss tests, I just figured you had a bad doctor and little opportunity down there in rural Louisiana to find a good one. I would lie awake with murderous fantasies passing through my mind if I had to put up with that crap all the time. I really feel for you. They couldn't save Steve Jobs--although they did prolong his life by many times what poor people could have expected--but I bet he never had to piss in a cup for a mandatory drug test. I envy the rich because the rich are treated better, and they have more options for treatment.
It is a shame that you must endure so much pain and there never seems to be an end to it. "Hang in there" and all the nice things people say dont help the one in need. I know that.
Snowy, your frustration shines thru the pain. I think wanting to know, for sure, what the real cause is makes one scream and rant - as a safety valve screams when the pressure gets dangerously high.
Doctors are pretty good at diagnosing lots of illnesses, like the common cold, influenza and other well defined problems. When they DON'T know they call it a syndrome. Irritable Bowel Syndrome is a favourite response if you complain of stomach pain.
I went through a period of about 10 months with occasional, but severe, solar plexus pain. Had six spells in hospital for short periods, usually given a morphine jab in the thigh after a few hours of tests. Had tubes with tv camera shoved down my throat, various xrays and other tests. No reason for the pain was EVER forthcoming.
This was in the mid 1980s and then the spasmodic pains just stopped. For months I was waited for the warning signs to occur again, but they didn't. Of course I'm glad those excrutiating pains have just stopped - but I have no idea what the problem was.
I wish you everything you wish yourself and hope you continue to keep writing and letting off steam. Kindest regards, Phil
Hey there, dear Snow.....I can't add any intellgent comment regarding doctors and medication...
but, one thing I do know is that you are one lucky fellow to have Brewsky there with you.....keeping you company while Peggy is away.
Just back from my time in New England....ah, gorgeous...plus my hosts had a dog and cat! I kept *threatening* to cat-nap the cat...and take her home with me.
I miss having a pet.... (my Ex has our dog... and I currently live in a no-animal apartment).
I know you feel your life is hard....but believe me, you have a lot going for you! You are loved by a wonderful woman, you are wise and witty, you have two loving pets and many blogging friensd who care a great deal about you! I am one of them!
Hugs and more hugs,
♥ Robin ♥
oh dear...the saga goes on...I am a bit hopeful about the Cymbalta tho after the relief it's given me for my peripheral nerve pain....so here's to better times ahead dear boy...and good on you for tackling the laundry...some pics in the next post maybe???
Snow, I didn't mean to imply that the pain was temporary, I meant that your "sounding out of it" was temporary. And it was.
Just because said: all the nice things people say dont help the one in need.
I find that they do. Sometimes, people will recommend therapies that are quite far afield as to anything other than anecdotal evidence, and then I'm at a loss as to whether to just thank them and leave it at that, or whether to explain my reasoning for not paying good money to, for example, have the plates in my skull rearranged (cranio sacral therapy), something which isn't even possible. Of course, some such things could even work for reasons that the practitioners themselves don't understand, but I still have to go with what makes sense to me. Unfortunately, few alternative therapies are closely studied simply because drug companies can't make money from them.
Philip, I'm glad you got well before someone had the bright idea to cut you open, because even with all the modern tests, exploratory surgeries are still done.
Yes, Robin, I DO have a lot going for me, and it's what keeps me going.
Rhymes, I understood what you meant, but I can see how you wouldn't have gotten that from my comment.
Chrisy, you're on Cymbalta! I was hoping some would write who was. He suggested either Cymbalta or one of the old tricyclics, and I've had those. If the Cymbalta doesn't help, he'll want me to try Lyrica. I hate being a guinea pig for new and expensive drugs with side-effects that are still largely unknown, and which are seldom any better than drugs that are already on the market, but sometimes there's nothing else to do.
i feel your pain Snow but glad to hear you're up and getting around, doing jobs around the house. My hub is presently doing the exact same thing but he claims 3 coats of paint is 2 too many.I had a pill counting Dr. once; he insisted i bring all meds when i saw him; he never gave me any, nor did he offer any wisdom; he just wanted to look at and count my pills.I stupidly stuck it out for 3or 4 visits then clued in hey this guy hasn't got a clue. One day my pcp asked how i liked the East Indian Dr. I said no; he's Chinese....turns out i had been mistakenly sent to the wrong guy!Poor fellow didn't know what to make of me but he'd never admit it as long as i showed up and brought my meds, lol.
I enjoyed reading your last post and all the comments about it. I don’t have much to add – you know a lot more about Christianity and other religions than I do. I am just not that interested in the subject. As I told you before I come from a country where religion is no longer a big issue.
I am sorry about your pain. My knees have been bothering me quite a lot. I went to the doctor in August. He said they would order some injections for me and call me as soon as they would get them (not cortisone, but some other stuff.) Yesterday I called back since we are now in October, shouldn’t they have received the stuff by now? The doctor’s office told me that yes they had received the injections in August, a week after I saw the doctor, but somehow they forgot to call me – so sorry she said. Well by now I can hardly walk and barely can sleep – it’s like a knife comes and go in my knees. But they are busy until the end of next week. No wonder health is not number one in this country….
You are sure courageous to do all this painting – that is tiring and hard on you. Take it easy.
Just checking in on you, Brewsky and Blue.... I hope this week will be a good one...is Peggy due back this week?
BIG HUGS,
♥ Robin ♥
Peggy is due back on Sunday (she will have been gone 15 days), and I'm still working as hard as I can on my painting and shelf building project. It's clearly more than I should have taken on, and I'm throwing every pill I've got at the pain. I awakened this morning in despair because I know that I will never again be able to do enjoy the kind of work that I used to do so easily. I also tend toward reclusiveness when Peggy is away. Having her here cheers me, and that enables me to interact with other people, whereas when she's not here, I go to extremes to avoid people. I did attend a support group that was held by my atheist group on Saturday, but I felt that going had been a mistake almost as soon as I got there, so I left long before it was over. I'm actually less lonely when I'm alone than when I'm with others because the pain and despair makes me feel that I don't belong. It's as if I'm on an island from which I can see other people, but I can't make myself seen by them, and it would be too humiliating to try even if I could. At such times, I can understand people like Ted Kaczynski. If I were alone all the time, I shudder to think about the outcome, although it wasn't always so. It's the pain that has changed me. It makes me reckless in regard to my own life, and it leaves me enraged at others. I have to make a continuing effort just to be minimally kind to Bonnie and Brewsky.
It sounds tough, Snow. At least in the blogosphere there's a way to connect that's more under your control, I suppose rather like slow release medication. But pain such as you describe sounds terrible. I suspect I'd be like you and want to avoid people who might only make it worse.
I hope you succeed for pPenny's sake. And I wish the doc would get their facts straight but doubt that wish will be granted. They seem to have a lot invested in the drug companies and need people to feel pain.
Gosh! That is just too much. Please know that I am with you in spirit (if there is such a thing) and I've been reading your emails through a busy hell week (and I'm very much thankful) . If I could, I'd give you a therapeutic massage (coming from a line of traditional healers and all).
Oh, Snow. I honestly don't know what to say. I wish I had some words of wisdom for you, other than I'm glad Brewsky is sleeping with you. It's got to be comforting.
Here in BC, my primary care doctor has to refer me to a specialist before I can see them. The pharmacy keeps track of any drugs prescribed...I can never get more than a month's supply at one time.
Presently, I'm taking a course called Living a Healthy Life With Chronic Pain through the University of Victoria.It's an online course; most of it I already know, but there is some new stuff in dealing with pain I didn't know. One thing I did discover...there are a lot of people who struggle with chronic pain every day out there.
I'm on Lyrica. I'm not sure I would advise anyone else to try it. It does help to a degree, it takes the ferocious electrical buzzing going through my legs and arms away. And I believe it numbs pain somewhat. But the side effects I could live without. I finally found a low dose I could live with.
I'm glad Peggy's home now...hope Brewsky will still be allowed to sleep with you! xx
Marion, I'll check out the course recommendation. Thanks.
No, Brewsky isn't sleeping with me now--he's back in the laundry room at night. It's not that Peggy is mean, but that his behavior is very different now that she's home in that he moves about and cries off and on throughout the night instead of settling down as he did when it was just him and me and my project was holding his attention during the daytime.
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