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This is what a Good Day[tm] looks like:


(One Thermacare or other brand heating patch, a Lidocaine patch cut in half - one on each forearm, five vicoprofen, two tramadol, and one extended release tramadol.)

On Good days, I am able to go to work, maybe do some shopping, carry things, open doors, open bottles and jars, and cook dinner without too much effort.  All I need is a mid-afternoon nap, and I'll be in okay shape all day.

This is what a Bad Day[tm] looks like:


(Two heating patches of some sort, one on each arm, two Lidocaine patches, one on each arm (double dose), six (max daily dose) to as many as eight vicoprofen  - really bad day! - four tramadol, and one extended release tramadol.)

On Bad days, I can't drive to work, can't lift anything too heavy, can't hold a book or use the computer for too long, or do much more than sit on the sofa with a pillow or two to prop me up.  I can, thankfully, sew, but I will need breaks.

Today is a Bad day.  I probably won't hit eight, but I might hit seven vicoprofen.

Useful Fact! - the pain pills do not ever get me high*, though sometimes they will make me a little sleepy.  They allow me to function.  I have tried everything else - believe me, there is no end to the helpful suggestions.  A subset of the "helpful" suggestions I get are proffered in a very disapproving tone, as if I just went for the drugs because I wanted an easy high, and if I really wanted to get better, I'd just try blah blah blah.  A lot are offered with a genuine desire to help, but you know what?

I already know what you're going to tell me to try.  I know what everyone's sister, Mom, cousin, hairdresser, or roommate from college tried, and how "it totes worked for them, have you thought of trying it?".  I get very tired during these conversations, because I've heard them again and again and again - I've had this condition for over eight years now - and it really comes off as rude.  I am amazed at the number of people who really want me to stop taking medication, as if it's a personal affront to them that I need painkillers.  For so long, the US has been fed the idea that drugs are only used to get high that we have disappeared the large numbers of people who need heavy-duty painkillers to kill the pain they experience - not just chronic sufferers like me, who are often accused of "faking it", but people with cancer, post-surgery pain, nerve damage. 

If you don't live with chronic - every day, every hour, sometimes or often bad enough to make you cry - pain, don't offer me advice.  You don't know.  You can't know - and I'm really glad for you.  No-one wants to wish days like this on anyone.  But please, don't presume you know better than me what works for me.  If you don't know me well - as in, you talk to me at least once a week, and we've known each other and socialized for years - don't, when I let you know about my pain, DON'T start offering advice, okay?  You don't know what I've done, what I've tried, or how it has/hasn't worked. In fact, don't do it to anyone, no matter if you think you know the secret to Life The Universe And Everything, don't offer it unless clearly asked, as in "do you know of any other possible theraputic options I might try?".

It is presumptious to do otherwise.  And on a day like today, I might not have the resources to be polite.

So, to forestall offers of advice, off the top of my head (I know there's more), here's what I've tried and rejected:

Yoga
Chiropractic
Physical therapy other than strength training to stop my muscles from atrophy
Hot baths
Warm compresses
OTC painkillers (Aleve, Tylenol, Advil, aspirin, Midol, Excedrin, etc.)
"Thinking positive"
Prescription Drugs other than the ones I am currently taking, including off-label use
Exercise
Diet
Losing weight (no-one's told me to gain weight yet, but when I weighed 200lbs, I did not have pain!  Coincidence?  HmmMMMMM???)
Prayer
"Being a better person" (because this condition is totes my fault, yes?)
Surgery
Wrist braces (the pain is in the entire arm; today it is centering around my elbows and upper arms)
Going Vegetarian
Going Vegan
Fad diet (Atkins, etc.)
Glucosamine/other joint supplements
Herbal "supplements"
Homeopathy (do not get me started)
Massage (my insurance will no longer pay for therapeutic massage, and most spas cannot do deep tissue for the length of time I need)
Giving up sugar
Giving up alcohol (does anyone actually think I drink loads of vodka when I'm on heavy duty painkillers?!)
"Getting over it"

That last one is a killer - the implication is that I like the attention chronic pain brings me, and the "special treatment" I get, so I'm willingly in pain. 

All you need to know is that the people closest to me know I am in pain.  If you doubt me, or think I'm faking it for the attention, ask them - they've seen me cry.

Okay, need to stop now.  Hurty.

*Friends notice I get a bit more chatty when they kick in, but that's it.

Comments

( 131 brains — Leave a chunk of brain! )
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christylee
Feb. 23rd, 2010 04:29 pm (UTC)
Hang in there! I understand chronic pain. I work for www.alpha-stim.com.



sileas_1
Feb. 23rd, 2010 04:31 pm (UTC)
Does it help to know that there are others out there who suffer chronic severe pain as well? I've suffered from severe migraines since I was about 13 (I'm 60 now) and yes, I've tried every remedy known to man. Who wouldn't try anything and everything to get rid of serious pain. I know what works for me now, and I'm content to stick with it. Unless my doctor suggests something new, I'm really not interested in what worked for "your aunt Betty". I detest the attitude that some health professionals have that I'm just an addict looking for a fix. I hate the constant folk remedies people (who I know are well meaning), and I just want to be left alone to get through the day with what I know works for me. If I don't follow my own well established regime I will be in bed for a week with the windows blacked out and my earplugs in.
I so empathise with you.

Edited at 2010-02-23 04:32 pm (UTC)
attack_laurel
Feb. 23rd, 2010 05:23 pm (UTC)
Oh yes - one of the great things about the Intarwebs is finding the huge numbers of people who do suffer with chronic pain - they're the great invisible, though, when it comes to media reporting on Rx drugs - too often, I've seen a segment where a person says "I couldn't handle the drugs; I'd rather live with the pain", and this is held up as a rational sensible thing for all pain sufferers. Only people who don't experience chronic pain can actually think it's reasonable to deny pain sufferers the medication they need to function.

And I hear you on the migraines! I'm lucky, in that mine only come on once a month or a little less, but there's nothing I despise more. At least with the arm pain I can read or watch TV - with the migraine, I'm toast. :(

The advice giving is so wearing, isn't it? And we don't even get the worst of it - I read a poor girl's description of being accosted on the same day by two different strangers telling her that she wouldn't have "that hideous ugly acne" if she (in the first case) prayed and swore of chocolate, or (the second) paid $$$$$ for a "special guaranteed" Pro-Active knockoff. It's bad enough when you're the one bringing the subject up, but having total stangers telling you you're ugly? Whoo. I'd commit violence.
(no subject) - fiberferret - Feb. 23rd, 2010 07:07 pm (UTC) - Expand
heatermcca
Feb. 23rd, 2010 04:33 pm (UTC)
"...Being a better person?" WTF? I mean, what the actual fuck? Who says that shit to people? To someone who's in pain, who, WHO says that shit?! They should be avoided at nearly all costs. Unholy fuck.

I offer you a virtual nice warm paraffin hand dip (oh, man, I have so much love for those lovelylovely temporary dry heat delivery of a paraffin hand dip) if you like and the services of a reliable clue-batter that I sleep with know well. See, I get: more B complex vitamins, fish oil pills, vitamin D, exercise, diet changes of various sorts, yoga, positive thinking, prayer, and more. Most of the time I can nod and smile but there are days where it's very good to have my clue-batter hovering slightly behind me and glowering at people because someone's coming between me and my Bentyl. If you'd like to borrow him at some point, do let me know. ;)
attack_laurel
Feb. 23rd, 2010 05:25 pm (UTC)
But that's the whole point behind "The Secret" and it's ilk - the idea that you bring negative things on yourself by being a bad person.

It's some victim-blaming shit of the highest order.

Bob is more often in the position of protecting the other person from me. :)
(no subject) - heatermcca - Feb. 23rd, 2010 05:52 pm (UTC) - Expand
(no subject) - alba_ny - Sep. 11th, 2010 04:47 am (UTC) - Expand
HALLELUJAH!! SING IT SISTER!!! - (Anonymous) - Feb. 27th, 2010 07:01 am (UTC) - Expand
rebecca817
Feb. 23rd, 2010 04:34 pm (UTC)
I take it that these people who want you to "get over it" think you can't have pain because you are a young person. Some people don't seem to realize that you can have constant pain no matter what you're age. I'm 54 and I live with constant pain in my tailbone because I've fallen on it twice (that I know of) and now have arthritis in the area. One of the things I've noticed is that pain pills don't seem to really help except when it's really hurting and then it calms me down from grouchy to just so-so. My husband takes tramadol so occasionally I might get one of those when it's intense. He had back surgery a year ago. In fact, a year ago today I brought him home from the hospital. A year ago, this coming Thursday, I put him back in the hospital because he could no longer walk. He did come home walking four weeks later but it involved reopening him, cleaning out the infection, dosing him with antibiotics and then rehab to get him walking again. It's been a long slow process. He moves around in bed an awful lot due to pain and only sleeps about four to six hours because of pain. So, I kind of know what you're going through.

I'll keep you in my thoughts today and hope that the day gets better (although they usually don't). Oh, and today is one of my hurting days too....I'm with ya
aeddie
Feb. 23rd, 2010 04:39 pm (UTC)
An open response from a chronic pain sufferer.
Your last paragraph is SO true. Even though I have had continual pain for over four years now (and assuming I knew you other than online) I wouldn't presume to offer advice because everyone's pain is different.

Edited at 2010-02-23 04:40 pm (UTC)
attack_laurel
Feb. 23rd, 2010 05:26 pm (UTC)
Re: An open response from a chronic pain sufferer.
inorite? :)

evil_fionn
Feb. 23rd, 2010 04:41 pm (UTC)
((HUGS)) if it doesn't hurt to much and I wouldn't offend you by being all up in your personal space.
:-)
It really never ceases to amaze me the number of people who are horrified or judgmental when others have to take medication for pain, yet dive head first into the prescription bottle when THEY'RE hurting.
Of course, working in the hospital, we see more than our fair share of hypochondriacs and drug-seekers, so my veiwpoint is a little bit skewed.
Pain is individual. There is no way to quantify it.

I hope you feel better.
attack_laurel
Feb. 23rd, 2010 05:42 pm (UTC)
I really hate being quizzed about what I've tried, too. The only person that gets to do that is a new doctor, because they need to know.

I *hate* the quizzing - 1. I don't have to justify my choices to you, random person, and b. It's none of their business.
(no subject) - heatermcca - Feb. 23rd, 2010 05:55 pm (UTC) - Expand
hugh_mannity
Feb. 23rd, 2010 04:43 pm (UTC)
I'm extremely grateful that I only have diabetes to deal with. Chronic pain sucks worse than diabetes. Before knee replacement surgery I had pain that wasn't as bad as yours (judging from the meds you have) but it was horribly debilitating even on a good day. On a bad day... well, I'd rather not remember the bad days.

Despite my long rant in my journal today, I'll take diabetes over pain thankyouverymuch. I can pretty much ignore diabetes between meals, but pain just doesn't like being ignored.

You have my utmost sympathy.
alysten
Feb. 23rd, 2010 04:45 pm (UTC)
You have elegantly put into words, what I struggle to tell people everyday.
curiouschilde
Feb. 23rd, 2010 09:27 pm (UTC)
Ah-men to this!! Ah-men to this. I also struggle everyday with chronic pain. Fibro sucks.
(no subject) - alysten - Feb. 23rd, 2010 09:38 pm (UTC) - Expand
(no subject) - curiouschilde - Feb. 24th, 2010 12:49 am (UTC) - Expand
silverluz
Feb. 23rd, 2010 04:45 pm (UTC)
I am so sorry you are going through this; I don't think I can begin to imagine it. I have a hard enough time with my combination of chronic (but manageable with OTCs) and acute (but manageable with RX drugs) pain. There are probably less than 5 days a year that it prevents me from working (at which time it's also preventing me from sleeping, eating, or thinking straight). Even so, people still think it's my fault, or that I'm making it up. If I just fixed my posture, did strength training, did yoga, meditated, worked through it...! Let me tell you, very little in the world could make me happier than if any of those helped. The doctors are just as bad as everyone else - really, if I was just a drug addict, how on earth did I stretch my last prescription a year past it's expiration by taking it only when I absolutely had to? It just so happens that opiates are actually effing effective for me.
brickhousewench
Feb. 23rd, 2010 04:46 pm (UTC)
Preach is sister!
For so long, the US has been fed the idea that drugs are only used to get high that we have disappeared the large numbers of people who need...[drugs]

And this is why I waited way too many years and had to get into my fourth deeeeeep funk before I finally broke down and asked for anti-depressants. And once I got back on an even keel I struggled with the fact that I "need" drugs in order to be happy. I tried slowly weaning myself off twice, and both times were a royal failure. The drugs effectively take away the megaphone that my inner critic owns and uses with abandon. I didn't know how peaceful the inside of my head could be until I was properly chemically balanced.

But now that I've accepted the fact that I like myself much better when I'm well medicated, I'm all for better living through pharmaceuticals. If you need drugs, you need drugs. No questions asked.

Edited at 2010-02-23 06:07 pm (UTC)
soldiergrrrl
Feb. 23rd, 2010 11:08 pm (UTC)
Re: Preach is sister!
*points up* What she said.

Seriously. I know way too many people for whom pain is a constant, unwelcome companion, and the drugs they use to control it are the only reasons they're functional. I'm blessed because my mom is a nurse, and explained to me, when I was concerned about the narcotics my ex-husband used to control his pain, about how those drugs work for people who have a need for them. I'd say I'm surprised at how intrusive people can be, but I'd be lying.

Re: Preach is sister! - faeflitt - Feb. 24th, 2010 09:04 am (UTC) - Expand
zihuatanejo
Feb. 23rd, 2010 04:46 pm (UTC)
Thank you
snailstichr
Feb. 23rd, 2010 04:47 pm (UTC)
My ex takes enough morphine every day to kill a horse just to function. He can still drive and use power tools without impairment. He does have a huge thing for Sarah Palin, but his political views were goofy before he was on proper pain management, so I guess i can't blame the drugs for that. :) Every one who knows him is grateful that he has the drugs. Life with pain isn't pretty.

By the way, he swears that a hot tub (in addition to pain meds, not instead of them, mind you) helps a lot. But - don't add liquor to the pain meds and hot tub. All the water makes your hands slippery and you will spill your drink. Then you have to deal with the awful guilt of wasting alcohol!

harleenquinzell
Feb. 23rd, 2010 04:48 pm (UTC)
Have you tried daily bathing of your hands in the warm and still arterially-spurting [for that pulsing massage action] blood of the stupid? It's a naturally occurring resource so it's homeopathic, and it's renewable so it's ecologically sound, and blood has lots of iron and minerals in it so it's healthy, and it was available in period, so you can even use it at SCA events!

I don't know if it's covered by insurance co-pays though.

<-- helping.

newperspectives
Feb. 23rd, 2010 06:26 pm (UTC)
I like this one!
Also bee-sting therapy might be an idea: cover the fools in bees. And leeches, while we're at it, k?
ravena_kade
Feb. 23rd, 2010 04:50 pm (UTC)
gentle HUG
rikibeth
Feb. 23rd, 2010 04:51 pm (UTC)
I'm just glad that you CAN take vicoprofen for it, and that it gives results -- I have never been able to keep vico* or codeine in any dose stronger than cough syrup in my system long enough for me to get any benefit from it.

I do wonder if a Certain Herbal Medicine would give you good pain relief, but I suspect your local laws aren't conducive to finding out. In Massachusetts, they've downgraded it to an infraction -- simple possession gets you the equivalent of a traffic ticket. If I lived there, I might keep some around for Bad Menstrual Months, but the laws in CT are harsher, and I don't need the hassle.
faeflitt
Feb. 24th, 2010 09:11 am (UTC)
I am so glad to be back in Colorado (not that I have taken this route, but it is comforting to know that it is there if I need it). I hope that our dispensaries stay sane and don't screw this up and that the other states wise up soon.

It is slightly reassuring that President Obama recently signed something that decriminalizes MMJ patients who hold a card in one state if they are in another state that also has MMJ laws on the books. It is not perfect, but it is progress.

Also, love your icon!
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