Good morning Stephen.. just wanted to wish you a very happy, happy birthday today!
Happy Birthday Wabbit!
(38 posts) (21 voices)-
Whiterabbit-uk
Games GuruThank you copmon, very nice of you to remember.
I had to leave my comfort zone this morning to see a pain management specialist which I've employed privately (through my legal team) to see if anything can be done to help my situation. I had to travel across the Pennines to see her and the weathr was wicked. You couldn't see very far for the rain and mist over the top of the hills; still it was nice to get out of the house. I've been stuck indoors for over a month.
She basically told me that due to the dose of opiates I'm taking at the moment, which is equivalent to 150mg of morphine a day I won't survive for very long. Those were her actual words. She is one of the UK's leading pain specialists so I'm inclined to believe her. she told me my perosnal doctor was very remise in his duties regarding regular checkups and she's advised me to seek a full medical examination and also seek am endocrinologist as the long term effects of opiates can mess up my hormones.
When I used to administer morphine to clients/patients it was usually no more than 10mg per dose, which usually lasted for a minimum of four hours up to six hours, anything over 10mg was usually reserved for post operative patients or those in severe pain following serious road traffic accidents and the like, so I was very shocked when I discovered how much I was actually taking. On top of that I have to take gabapentin to stop a shock like pain that travels up my spine if I sit in the same position for more than several minutes. With respect to the opiate meds I take two long lasting tablets 12 hours apart plus a three day patch, both of which hide the actual dosage I'm taking, so didn't realize how much I was actually on. No wonder my memory is affected and that I'm sleeping 16 hours a day. Crazy.
I asked about using one of those pain pumps and she told me categorically no. :(
Oh well........
At least I have the rest of today to enjoy my birthday. There will be a nice meal and the kids have promised to be on their best behaviour. :) (on pain of death, lol)
Posted 12 years ago # -
mikiem2
ModeratorCheers, Happy B/Day & all. :)
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also seek am endocrinologist as the long term effects of opiates can mess up my hormones.
FWIW & all that, there's bound to be all sorts of effects beyond the endocrine system. **Might** want to see if you can find docs etc. that can approach the rest of your body & its health from a holistic perspective -- probably won't cure your pain but it might lead to the rest of your body working better, making a longer-lasting life a bit better.
Posted 12 years ago # -
Whiterabbit-uk
Games GuruThanks guys, much appreciated. To Mikiem, I have also seen respiratory, urology, several orthopaedic and gastroenterology specialists as well as sleep studies and even a breast clinic. (make of that what you will) :) All related to the accident
Posted 12 years ago # -
Whiterabbit-uk
Games GuruYou know what I say to that pavid, but I can't write it here.......$*~#@£%
Posted 12 years ago # -
NolafromNZ
MemberA happy, although probably belated birthday from me too, Stephen. All the best for the future. I hope something is sorted out soon regarding your meds.
Posted 12 years ago # -
Whiterabbit-uk
Games GuruThank you to all for the birthday wishes. They are very much appreciated.
Hi litemotif, my legal team had considered including my doctor in the legal claim, (the two defendants are the woman who caused the accident and the hospital who sent me home with no treatment); but decided (at the time) that there wasn't enough evidence to make a case.
I think the problems associated with the medical practice I use was that it was in a village environment and they were massively in debt (millions of pounds), so had been reticent to refer me to various specialists. In the end it took over nine months post accident for them to send me to an orthopedic specialist, by which time there was little chance of fixing the problem. :(
p.s. those carrots look scrummy. :)
Posted 12 years ago # -
Deserthead47
MemberBirthday greetings from fellow gabapentin and morphine sufferer(50mg slow release x twice daily),have been trying to cut back on 'breakthrough' pain pills during day so know how you feel about it....
Don't let it bother you today,just enjoy !!!
Posted 12 years ago # -
Whiterabbit-uk
Games GuruTried it buzz; when i drop one of the slow release tblets the pain is noticably stronger. I'm hoping to try something different to the duragesic patches that I'm using at present.(Fentanyl), It's that which is causing most of my drowsiness. I used to be on a different 7 day patch with a less somulant inducing morphine derivative, but I became allegic to the substrate and possibly the analgesic as well.
I'm certainly going to change something though after what the specialist said to me. I do find pain management specialists annoying though as they seem to think most of the pain is in my head (well, I suppose it is technically), but you know what I mean. I've been told previously to work through the pain and they say it will get better; tried that and ended up with a worse situation.
Sorry about hijacking my birthday wishes with medical stuff.
Posted 12 years ago # -
Campy
MemberWabbit, I don't consider this a hijack. Many of us care about you as a person and your birthday became a good reminder of what you are dealing with every day. Hope you can feel our good wishes!
BTW, it has been years (5+ I'm sure) since your accident. Is the legal stuff still unsettled? My recollection is that you were hit while biking. I am an exercise enthusiast, but biking scares me. My brother was hit while riding his bike, but fortunately he has healed. Anyway, all the best and my wishes that your health is improved at your next birthday.
Posted 12 years ago # -
mikiem2
ModeratorI think the problems associated with the medical practice I use was that it was in a village environment and they were massively in debt (millions of pounds), so had been reticent to refer me to various specialists.
Having experienced my share of unbelievably terrible treatment I wouldn't be making excuses for them -- the *Why* may matter to a judge or jury but it doesn't lessen your pain & suffering. And psychologically "Why?" may tie you &/or your loved ones in knots. I know the following could be said in better ways -- Sorry but it's the best I can do at the moment...
I don't know anything about your accident & treatment, WR, or immediate lack of treatment it sounds like, nor do I know how you deal emotionally with it all. I've been diagnosed with CFS/ME & FMS, & the 1st especially is controversial in both of our countries [US & UK]. It's helped me loads to accept that some people tend more towards naughty than nice, may in fact lean to, or just be plain evil, that there doesn't have to be a reason let alone a good reason for what they do or have done. I don't believe the concept of evil is exclusive to faith or religion, but it does go beyond simply being mean -- you can read about what I consider an example in the UK here: http://www.supportdrmyhill.co.uk/
For me the benefits of accepting that some docs, some people are evil fall mainly into 3 categories... 1) much fewer negative psychological effects from trying to understand, alibi, excuse, or account for behavior & actions that seemed otherwise incomprehensible. I learned it's OK to feel angry or even furious at what they'd done, maybe the same way you might feel about some of the "scammers" you talked about the other day, WR. 2) I learned that it's OK to realistically assess people in the medical profession the same way I might a used car salesperson or anyone else. There are good, bad, & evil auto mechanics -- running shops I've seen all three. Similarly there are good, bad, & evil docs -- being a patient with severe, disabling illness I've seen all three. I've seen otherwise totally reputable auto repair shops totally screw some customer(s) -- I've seen respected docs who only acted evilly towards some patients. I've learned the hard way to treat anyone in the medical field the same way I treat any sort of repair person, tempering expectations, receiving their recommendations with the same sort of scrutiny as if they were coming from the service dept. for whatever PC component, with the same degree of skepticism as if a mechanic told me my car needed a new engine or transmission. And 3) because of numbers one & two I [eventually] learned that I could limit some of the negative results or effects when a doc was wrong (or being evil). It's you who suffers or benefits, so it's your [& your family's] job to evaluate & accept any doc's advice/suggestions, &/or to seek additional advice/suggestions.
You wrote earlier: "When I used to administer morphine to clients/patients...", WR. I take that to mean you worked in a medical (or related) field. If so what I wrote above may be or seem hard -- again Sorry. It'll likely be harder still when I say that some of what you were taught, some of what you believed, indeed some of what you believe today may be wrong. Science, particularly medical science advances daily if not by the hour -- most docs & the teaching in medical schools do not advance that rapidly, nor do they always instill the need/desire to continually update one's knowledge the way more tech fields do. And because of the sheer breadth of medical knowledge, there's a tremendous amount that's not shared from one aspect or discipline with the others -- it doesn't help that many, Many docs are outright hostile to anything they weren't taught in med school. [In the US docs running gov agencies have a long history of making sure their agencies actively discouraged research of my illnesses -- in case that statement seems *out there*, it was proven that the CDC refused to spend funds given it by Congress specifically for CFS/ME on CFS/ME (the US Congress was Not pleased), & that's but one of many *known* examples.]
Long story short Please, Stephen, enlisting family & friends as possible, search out anything that's been reported to maybe help your pain, & check it out, regardless what your knowledge or any docs may say, may predict. Of course don't do anything dangerous -- do research or have someone research any potential treatment -- but do keep a Very open mind. That's the essence of Science after all, which tries to discover why something works, not determine beforehand that it can't work & so dismiss it without a look. :)
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I do find pain management specialists annoying though as they seem to think most of the pain is in my head (well, I suppose it is technically), but you know what I mean. I've been told previously to work through the pain and they say it will get better; tried that and ended up with a worse situation.
Then, purely in my own opinion, you've been seeing the wrong pain mgmt specialists. My major was organic chem, so you would understand the science better than I, but as you know from your biology ed. pain can be boiled down to chemical reactions in & with cells. Obviously that's how/why the opiates you take work, but they're not the only things that influence those chemical reactions/interactions. I've seen 1st hand people find relief through things like bio feedback, acupuncture, acupressure, meditation/tai chi/yoga/qigong etc... what & when I've seen it work it's been highly individual/anecdotal, but there was never any doubt that those that found some relief, actually found some relief. I've also seen/read/heard where other meds &/or chemical compounds have an as-yet unexplained but definite positive effect. The best pain mgmt. docs/clinics, the ones that get results when conventional treatment starts/ends with "work through it" &/or opiates, devise an individualized regimen based on which treatments work for you.
I also know all that stuff can seem quite impossible when you're in the midst of the worst pain you can imagine -- I remember being drugged just so I'd stop screaming, & mustering resolve to find another way was incredibly hard once I was drugged. All I can say is Please find it -- please try to get your wife to feel the same resolve & help. Just having hope itself can work wonders. So can being too mean, ornery, & nasty to accept what today has to offer. :) If life kicks you in the groin, scream a little if you must, but get up off the ground & fight back as much as you can... :)
Posted 12 years ago # -
Whiterabbit-uk
Games GuruThanks Mikiem, I'll come back with a reply over the next day or so. I will say that we have looked into numerous different therapies to ease the pain, and my wife has researched till her head is bursting. The docs don't like it when you know more than they do about a particular area of medical science. We've been told by some to leave it to the experts, but that will never happen. We have both lost faith with the medics.
To re-register in the UK you have to show that you've studied and taken at least a certain number of official courses every few years. If you can't prove that you've done that you will lose your professional registration.
Posted 12 years ago # -
Happy Birthday Stephen! Sorry I'm late on the party but as many of you have seen I haven't been on here to much lately, kinda busy with life these days lol.
Posted 12 years ago # -
Whiterabbit-uk
Games GuruHi Chip, I hope alls well with you? not seen you on Steam for awhile either. :)
Posted 12 years ago # -
mikiem2
ModeratorThanks Mikiem, I'll come back with a reply over the next day or so.
Only as you wish [Princess Bride is on :) ] & as you're up to it. :)
I will say that we have looked into numerous different therapies to ease the pain, and my wife has researched till her head is bursting.
You don't say, WR, whether you've tried any of the stuff your research has come up with, or if you sought your doc's approval 1st. Everything I've ever read, many a success I've had with treatment, was the result of just trying whatever to see if it worked *For Me* -- as long as an alternative treatment poses no health risks, & most don't, you've very little to lose. My current doc would never prescribe most herbs/supplements because he's been taught real medicine comes with an Rx, but as long as there are no interactions with meds I'm taking, &/or potential side effects with my health problems, the worst that can happen is I'll waste a bit of money. With an initial search [Google/Bing] I'll come up with the same interaction data he would, & I can spend more time researching use complaints/reports than he could too. The same trial approach goes for the meditative &/or mild physical therapies like Quigong [re Quigong, think of a less demanding version of Tai Chi even an old disabled guy like me might handle at home]. Just having hope that whatever you're trying might help, helps. Because the cause & mechanism of my illness is unknown, many, Many docs prefer to think it doesn't exist [a thought process not entirely dissimilar to how healers of the middle ages & earlier treated disease]. Even more docs feel that a treatment they don't entirely understand can't work, because they don't understand how it could work. Well, there's an incredible amount that they don't understand. Wired recently had a good article on how big pharma runs into difficulties because what works on paper & in labs doesn't always work with real people -- it costs them huge sums of money, so if greater understanding could be had for any price they'd pay it [and of course we'd pay in turn :) ].
When we moved to Arizona I hooked up with a Great, open-minded CFS/ME & FMS doc. At the time [~'95] there were fewer potential treatments, so everything he tried fell into alternative medicine or [mostly herbal] supplements. When we got to AZ I was almost wheelchair bound -- if I went to a store or mall I had to be pushed around it in a wheelchair, but could manage [with help & a cane] very short walks like from the car to our front door. A good part of every day was spent bedridden. A couple years later when we moved here [my wife was injured in a collision & lost her job etc.], I could run for [very] short distances, could walk a couple of miles, was bike riding every day, could drive again, & while I was still ill, still wasn't up to pre-illness normal, the difference was night & day. Doesn't matter whether I was typical or atypical -- what matters is sometimes stuff outside the medical mainstream works. Besides, the more life sucks, the less you have to lose & the more you have to gain. :)
The docs don't like it when you know more than they do about a particular area of medical science. We've been told by some to leave it to the experts, but that will never happen. We have both lost faith with the medics.
Same here, & "Frankly, Scarlett, I Don't Give a...". :)
I may be a dummy but I hate being used for a toy! I was refused all treatment where we live now because no one believed in my Dx, nor were they interested in coming up with their own Dx. That only changed when my illness led to other health problems [some severe] that they did believe in. Now that I had access to medical treatment I saw the FMS expert at the Med Cntr -- he called in a bunch of other docs & proceeded to demonstrate all the tender points, all the many, many places I hurt that triggered a dramatic response. He didn't/wouldn't offer any treatment -- just used me for a demo -- & I was a [mostly bedridden] basket case for weeks after. 2nd time was when I saw a neurologist, having suddenly developed more intense back pain than I ever thought imaginable... problem turned out to be a pinched nerve. There was a docs visit preparatory to surgery -- which I was too scared BTW to ever have done -- where I was initially examined by a doc's assistant. She started out checking my reflexes, then soon realized there were all these neat places where she could give me a tap, & watch fascinated as my body involuntarily went into the most amusing spasms & contortions. She was like a cat pouncing on, playing with the light from a laser pointer [I felt the effects for well over a month]. And those are 2 of the more minor indignities/effects suffered. While I try to treat everyone nicely, I care more about whether the cashier at the neighborhood market has had a good day than I care about how most any doc's feeling.
I've adopted a very practical, common sense approach where I'll tell whatever doc or nurse: "Don't know how true it is but this is what I've read". That gives them a way out, a way to save face or disagree, so they don't have reason to be angry. It often lets them skip the part where they'd try to explain the same stuff to me & get to business. And it implies, hints that I'm not a passive idiot, so they don't as often try to skip whatever, trying to rush me out of the office so they can get to the next patient. Watching their response also tells me a bit about their knowledge level.
To re-register in the UK you have to show that you've studied and taken at least a certain number of official courses every few years. If you can't prove that you've done that you will lose your professional registration.
Problem is the courses &/or programs are all conducted by the same docs with the same hostilities, closed minds, preconceptions & biases that maintain the status quo. Governments & world bodies recognize alternative & traditional medicine -- many [most?] western docs don't. In the US the CDC & NIH *Officially* recognize, & now fund research in CFS/ME & FMS -- the CDC has made a somewhat large educational effort aimed at docs & other med. pros. At the same time the NIH was not long ago told [forced] to curtail/deny research findings regarding CFS/ME that were part of a NIH presentation in the EU -- findings that had not just been well received, but I think in some early research confirmed.
What it boils down to is the medical communities in many countries are indoctrinated in a rather firm set of beliefs, those beliefs may be arbitrary &/or flat out wrong, & the indoctrination *takes* to varying degrees depending on the health pro or doc. Parts of the med community in the UK seems to want to enforce recitation of established dogma -- sorry if that's a bit strong, but the Lancet has published recommendations & findings that have been dis-proven multiple times world-wide. Then there's the hassles they put Dr. Myhill through -- there have been more than the single harassment talked about on the page following the link in my earlier post.
But enough ranting, with huge apologies...
Posted 12 years ago # -
Whiterabbit-uk
Games GuruNo problem Mikiem; thanks for sharing your experiences.
Re Tai Chi and Qigong; an old friend happened my way four or so months ago (hadn't seen him for several years). He's been into Tai Chi for many years. He spoke to his teacher about me and came up with some exercises that I could try. Pretty straight forwards stuff. I'm still at a very simple and early stage, but I like the lessons he's given me so far. I can only do a little at a time but hope to continue and improve with time.
Posted 12 years ago #
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