Yes, Virginia, There IS a Santa Claus!

Somebody pinch me because I couldn’t possibly be awake! Why? Because I saw a doctor, a family physician, who believes in treating the whole patient AND he treats fibromyalgia patients. AND he spent well over an hour with me today for a “meet and greet” that turned into a first appointment. You’d think that would be enough! But no … there’s more!

He explained more about fibromyalgia and how it’s treated in an hour than I’ve heard in the last 20 years combined. Instead of throwing a prescription of Tramadol my way, he really explained (even drew on paper) how each class of medication works to treat the fibromyalgia pain, something I never knew. He wants to wean me off the Tramadol I’ve taken for almost 20 years, and start fresh with a new regime. YAY! It’s about time! Those Tramadol are indeed addictive yet they are not nearly as effective for me anymore. This doctor explained that the Tramadol actually interfere with narcotics. So no wonder I’ve still been in pain! I’m pleased that he sees what I’m on hasn’t worked and is willing to try new things. But only one weaning me off one med at a time. Another yay! And obviously a smart doctor.

So how did I find this wonderful doctor? Actually through one of my best friends, one I reconnected with after a long absence in each other’s lives. She, too, suffers from chronic pain, but hasn’t had any issues like I have getting any pain relief (prescriptions) or having to go through those unconstitutional drug tests to get those prescriptions. For months she’s asked “why don’t you see my doctor?” Finally, it’s like a light bulb went off. Why don’t I see if her doctor is accepting any new patients? And then after I studied him, I was really impressed; one of his many awards is a Compassionate Doctor award. That’s what I’m looking for.

I found a great doctor willing to TREAT ME! Really treat me! And not be afraid of writing a prescription for pain medication. And really treating me, that’s the important thing. You just don’t know how happy I am! There is hope!

Yes, Virginia, there IS a Santa Claus and he’s a doctor. My doctor now. An early Christmas present! He’s even seeing me BEFORE the holidays so he can make sure I’m properly medicated to avoid/handle the impending fibro flare. Is he good or what?!?

P.S. I even was honest about everything that I have done for my pain, including cannabis use. He asked “which strain?”

We’re NOT the Criminals

As if things were not already bad enough, October 6, 2014, was certainly a change-game event for those of us unfortunate enough to have some medical condition that causes us chronic pain: the new DEA laws started. In an attempt to weed out the pill pushing pimps (HA!) now hydrocodone is a Schedule II narcotic drug, there are NO refills on pain medications, a new script is required each month. Mandatory random drug tests, only pain management doctors can prescribe our pills. Will the street pain pills be eradicated? ABSOLUTELY NOT! Example: how’s that “war on drugs” i.e., marijuana going? It’s not. Instead we’ve pissed away billions of dollars for what? Is it any more difficult to buy marijuana today than it was 20 years ago? 10? 5? Last year? No, it’s easier. And the quality is better. I’ll tell you one thing: it’s certainly easier to obtain the Schedule I marijuana than the Schedule II pills. And the pills won’t stop being sold on the street. Addiction issues will not end. There will ALWAYS be addicts. I mean, after all, what do we, as society, do with addicts? Do we treat them? No way! We send them to jail, then they’re back on the street. Different day, same story.

But instead society now gets to treat the person with the medical condition – that causes the chronic pain – to be treated like the criminals. Mandatory random drug tests. Wow! Only for us! Not a suspected drug addict, but for those of us with chronic pain (and the condition that causes it, remember that), we ARE treated like criminals, like drug addicts. What happened to reasonable suspicion? Doesn’t apply to the chronic pain. Thanks, doc, that’s $85 for the drug test that my insurance DOESN’T cover of the $270 DRUG TEST! Thanks DEA. Thanks lawmakers. The only thing you’ve succeeded in is pushing more pills on the street.

Guess what? The street’s STILL going to be full of drugs, whatever, whenever, wherever anyone wants. The pills? Will still be there. Wait, there will be MORE! Why?!? Because now that Tramadol is a scheduled narcotic (HA!), those pills will become the newest craze. Beware all those holding prescriptions, now we become new targets for thieves. How do you think the pill pushing pimps obtain the pills to sell on the street? Not the doctors, dummies!

They steal them! Thanks for the targets on our backs. Both literally and figuratively! Treat us like the criminals, make it nearly impossible to obtain the pain relief that our MEDICAL CONDITIONS CAUSE.

You know what ought to be against the law? Mandatory drug tests for people with medical conditions. Land of the free?

Shame on you, America.

Sick of Being Sick of Being Sick …

It’s a never-ending cycle, I might get a few days where I feel okay (because feeling GOOD is a rare day indeed), but most days I wake up and by the time I get to the coffee machine, I say to myself, “I feel like shit. I’m tired of feeling this way. I’m sick of being sick.” Almost every single day I utter these phrases. I used to wake up and say, “I feel like shit.” My hubby pointed out, “but you say that every day.” Does he become immune to my constant utterance of “I’m sick of being sick of being tired …” each and every day? Do I become complacent with feeling this way?

In a sense, I think some of that is true for both of us. While my dear hubby is a super compassionate person, and he certainly tries to be compassionate about my never-ending pain cycle, he certainly doesn’t KNOW my pain. I don’t want him to know it. I have almost accepted that this is my way of life. I’m going to wake up most days and feel like shit. That’s just my life.

As I’ve mentioned in previous posts, I’ve joined pain/fibromyalgia forums on Facebook, and I get depressed reading about other people’s depression, and how they feel like shit, and about how badly they’re treated at pain doctors, or rhematologists, or whatever doctor, when you’re not treated with compassion by your own doctor, face it, you are SCREWED. And sadly, most chronic pain patients are at the bad end of the shaft. From the doctor (“it’s all in your head,” “if you weren’t fat you wouldn’t be in pain,”) to the pharmacist, the stories I have read horrify me. That’s what I face. I’ve already had my own terrible experience with my rhematologist, and instead of putting up with her cruel treatment, I fired her. It felt good to send a letter that I was no longer a patient! Now I have to wait until December to see a pain management doctor. In the meantime, it’s up to my primary physician. Will she give me another two prescriptions in the meantime for my pain pills? And oh my, since Hydrocodone is rescheduled, can we change it to something that might just kick my pain? I mean 5 mg. of hydrocodone just doesn’t kill the pain. It does make life more bearable, but not better.

Trust me, if I could choose between feeling good or taking pills? I’d go for the feeling good! Please don’t treat me like a drug addict. Just treat me with compassion.

Because I’m sick of being sick of being tired all the time.

sigh

Raise Our Voices and Be Heard

It just really sucks hurting so bad. I’m not in a flare (at least I hope not) but I am recovering from one of my worst ones ever. Last night when I went to bed, I could barely keep my eyes open, and I slept soundly. Perhaps the insomnia has left me alone for a while.

I’ve joined several Facebook groups dealing with chronic pain and fibromyalgia. I’m not the only one hurting, I can assure you that. I’m not the only one with a horror story, oh no, mine is just a blip of so many, that I think the Earth’s surface could be covered. I’ve never read so many injustices, so many cruel statements, just so many of us hurting, and getting either no relief, or barely any. And the stories of what we go through, the ignorant looks, the suspicious glances, the embarrassment, it’s just downright sad.

Chronic pain, like mental illness, is an invisible disease, and both are not adequately treated, or even acknowledged. I read about one person’s doctor who said they would never prescribe pain pills because “fibromyalgia is all in your head.” Or another story about how a pharmacist not only refused to fill a prescription, but had called around to other pharmacists, telling them to deny filling this certain person’s script. It turns out the doctor had written something incorrect, but they wouldn’t even call. But they spoke about it – in front of a line of customers – and very loudly apparently. What the heck?

Or what about the person’s son who steals her pain medicine in the middle of the night. THESE are the folks that have put us in these positions, but WE are the folks who need to be treated with dignity, and the same privacy we expect – we deserve – from our health care providers. “Well, this is the only way we can prevent …” bullcrap! The DEA hasn’t done anything but make these pain pills even more attractive by making them so taboo. Even Tramadol, a non-opiod, is now going to become the latest trend on the street, all because it’s a scheduled narcotic (even though it’s not a narcotic, explain that, just like Lyrica) … So the folks on the street are going to keep on with the street deals, while us suffering in pain get treated like drug addicts. Some are even just downright refused to be treated anymore. One person said her doctor basically said, “I’m not going to treat you because of the DEA. Not risking my life.” Closed the door.

BAM!

It’s a travesty that we who already endure pain like you wouldn’t believe – because YOU can’t see it, YOU aren’t feeling it, but WE DO – it’s such a travesty that we are treated like druggies, forced to pee in a cup, all the time, just to get our medicine. But it’s not considered “medicine” at some drug stores – it’s a DRUG – and you’re a DRUGGIE – and you raise red flags – so we’ll just not fill your prescription here. WOW. At least I have never had my pharmacists or technicians do anything other than be professional and courteous, but there are those horror stories. Imagine you having to go pee in a cup every 2-4 weeks just to make sure you’re not doing anything you shouldn’t be doing. Is that right? Is that legal? I think NOT!

WE are being denied the treatment we deserve, and as a whole, we need to RAISE OUR VOICES AND BE HEARD.

If you want to join my fight, email me at chronicpainmanifesto@yahoo.com. Email me your story and I will collect our voices and our stories. Let’s stand up and fight!

If you want things to change, you have to BE the change.

What’s Wrong with Feeling Good?

Let’s say that you’re having to take blood pressure medicine – every day for the rest of your life – to treat your high blood pressure, and your medicine runs out. Instead of the pharmacy automatically notifying your doctor that you need a new script, you have to personally pick up your new prescription at the doctor’s office. (Only you can pick it up.) When you arrive, you are notified that you must go to the lab, pee in a cup, and then come back for your prescription. So you go back and you’re told that you cannot have your blood pressure medicine. Why? Because you had something in your system. Perhaps it was a double patty cheeseburger with bacon. Perhaps it was THC. So now you don’t have any blood pressure medicine. What does that mean? You could have a stroke and die. Is that right? Of course not. It probably seems ridiculous to you. It should seem ridiculous, because it is. We could take the same situation and apply it to cholesterol medicine, or any medicine that you rely on to keep yourself alive.

Having fibromyalgia and suffering from chronic pain shouldn’t be treated any differently than prescribing medication for your high blood pressure; yet we are subjected to random drug tests in order to receive our prescriptions for pain medication.

The imaginary situation I described? That’s exactly what we with chronic pain have to do. And that’s just not right. What happens to me when I don’t have any pain medication? Well, I’ve had to mete out about ten pills over the last three weeks, which means I’ve gone days without any pain relief. It’s been a terrible, excrutiating time for me. I’m now suffering a fibromyalgia flare because of no pain medication, and no marijuana, which acted as my natural sleep aid. Now I have insomnia and cannot get to sleep.

Remember, marijuana is a natural plant, which has been on our planet Earth for thousands and thousands of years. Who knows, maybe millions. And for over 4,000 years marijuana was used as a therapeutic medicine for all types of ailments. So I’ve got a double whammy right now – I cannot use marijuana in order to pass a drug test. I’ve been marijuana free for 18 days now and still test positive for THC, which makes me even angrier because I HAVEN’T USED MARIJUANA but I’ll test positive for it. And then I’ll be denied any further pain medication. I had to sign a drug contract! Do you have to sign a contract for medicine that you take daily? Of course not! So how is this the slightest bit fair?

That’s not all. Without that marijuana as my natural sleep aid, I cannot get to sleep at night. This is probably the worst side effect, and the absolute worse scenario for a fibromyalgia sufferer. We never reach that deep, deep stage of sleep, so our muscles never relax. Last night, I got less than four hours of sleep. The night before was about the same. Imagine this happening every night. Today I can barely function. I cannot just call out of work because I’m tired. I have very important work to do, but my head is full of “fog.” This is what it feels like on a “fibro flare.” Your ENTIRE BODY screams at you, and the pressure points and in my case, neck and shoulders, scream in agony CONSTANTLY. There isn’t one moment that I am pain free. And I might just face the situation where I run out of pills (I have ONLY TWO), and if I don’t pass that drug test, I don’t get my prescription, which means I suffer even more.

Marijuana is a plant. It is natural. It grows wild. It’s just like any other plant. But it’s therapeutic. It’s ALREADY been proven – thousands and thousands of years ago – that it IS therapeutic. So why in the heck aren’t we using it now? Why can’t I use it to help me sleep, to help my appetite (which I have none now), to help lower my blood pressure, to ensure that I don’t develop glaucoma like my mother and grandmother, it helps fight cancer (which my dad and other grandmother died from), it helps ease my pain, and so what if it makes me feel good?

What’s wrong with feeling good? Why is marijuana illegal? Because it makes us feel good. Again, I ask, what’s wrong if I want to feel good from using a plant?

Why do folks drink alcohol? Because it makes them feel good. But that’s legal. Why do folks smoke cigarettes, one of the most proven addicting substances? Because it makes them feel good. But that’s legal too. Why do folks drink coffee? Because it helps stimulate them. It makes you feel good. But that’s legal. But yet you cannot use marijuana, which isn’t addictive, nor is it debilitating like alcohol. But it makes you feel good.

It’s high time we got the truth out about marijuana. It’s a plant, it’s natural, and there’s absolutely no reason why a person shouldn’t be allowed to feel good.

And it’s a downright shame to make me suffer even more because I used a natural plant to help relieve my chronic pain. Gosh, I’m angry.

And I’m going to spread the truth.

Please help. Share this post – and any other blog post – that talks about this subject. Join me on twitter, @chronic_pain. You wouldn’t believe the number of people who feel the same way.

If you want change, you have to BE the change. Let’s make our voices HEARD!

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My Manifesto | Truth About My Pain, Pot, and Pills

Imagine that you feel like you have the flu – but without the “sick” part of it (you don’t have the stuffy head, cough, etc.) – meaning your entire body aches, you feel like you’re running a fever, and you have ZERO amount of energy. Now imagine feeling that way every day. EACH DAY. Can you even imagine?

Okay, now let’s add constant neck and shoulder pain that hasn’t subsided in over 20 years. Constantly. In pain. For over 20 years.

Yes, 20 YEARS. 1040 weeks. That’s 7,300 days. 24/7 constant, chronic pain.

I’m sure that most of you CANNOT imagine what this feels like, but if you’ve got fibromyalgia, you know exactly what I’m talking about.

CONSTANT pain. Constant. Imagine your brain yelling, “pain, pain, pain, pain, pain, pain, pain, pain …” 24 hours per day, seven days per week, 52 weeks per year, for over 20 years.

This is me. This is my life.

And it sucks.

So what do you do when you’re in constant pain? You do WHATEVER YOU CAN to make the pain subside, or at least be less intense. But how? In the United States, getting a prescription for anything that contains a narcotic is almost impossible. Let me tell you how many times I was given a prescription containing narcotics for fibromyalgia.

ZERO. NONE.

Yep, zero times. (But I did manage to have a couple of prescriptions written when I was in so much neck pain I couldn’t move my neck, and then for my neck surgery. I always managed to mete out these pills.) Not until we got a rheumatologist in town, after I had gone through intensive physical therapy, after I had neck fusion surgery, was I given a prescription for hydrocodone specifically for my fibromyalgia pain.

Because HEAVEN FORBID should anyone be able to feel good! That’s against the law.

Yes, I left with a prescription for hydrocodone. A WHOPPING 5 mg. Wow. (To give you an idea, you can get aspirin with 8 mg. of codeine over the counter in Canada.) Now the 5 mg. didn’t take away the pain, but made it less severe. I can actually function like a normal human being! Now I don’t have to make those pills from my surgery last over an entire year. Never once have I obtained codeine illegally. NEVER.

So I’ve been going to this doctor for over half a year now. I went to pick up my THIRD prescription (that’s only three in six months, do the math, I didn’t take a pill every day), but I was told I needed to go pee in a cup for a random drug test because of the new federal laws. Even though I’ve exhibited ZERO signs of being a drug addict, I’m assumed guilty until my urine shows that I’m drug free.

That’s a problem for me. A huge problem.

WHY? Because I did WHATEVER I COULD to ease my constant, chronic pain. That meant I smoked pot. Marijuana, mary jane, reefer, blunts, call it what you will. I call it my lifesaver.

Fortunately, I couldn’t take that drug test right then and there because of a previously scheduled appointment. I would have failed that drug test on the spot.

I’ve had to give up marijuana to pass this drug test. So now I’m faced with a serious decision.

Do I give up the marijuana that had long-lasting effects on my pain? Or do I give up the pills that occasionally make me forget the pain for say, maybe an hour? Sometimes two, if I’m really, really lucky. And that’s only every other day. The pills, yes, do more than the pot, but only for a fraction of time. I can’t be popping pills several times per day because I don’t have that type of prescription. And I doubt I ever will if these federal laws continue to exist.

Do I get high from these pills? Not really. But why? Because I’m in CONSTANT, CHRONIC pain. Those pain pills actually treat the pain, and thus, it doesn’t make me high. Now a person not in pain? Would certainly be high. Yes, these pills would make you feel good.

But feeling good is a problem in the United States. We have a war on drugs here. We have people sitting in prison for doing drugs. For feeling good. Feeling good shouldn’t be a bad thing.

So here I sit, mad as hell. And I have EVERY RIGHT TO BE ANGRY.

I shouldn’t have to suffer when there’s relief to be had. Nobody should have to suffer. But we with CONSTANT, CHRONIC pain do suffer. We suffer from pain ALL THE TIME. CONSTANTLY. CHRONICALLY.

What’s so ironic to me is that I can go buy a bottle of booze, which totally impairs me. Pot doesn’t. (How many car accidents are caused by driving drunk? Too many to count. But yet, how many car accidents have you heard were caused by smoking pot? Yep, none.) Or I could go buy a gun without any background check. Both the booze and the gun could hurt numerous people. But thank goodness, I’m not crazy. I don’t want to get drunk, nor do I want to shoot anybody.

I don’t even want to shoot the lawmakers who passed these drug laws. What I would like, though, is for any one of them to “fill my shoes” for a day. Heck, not even a full 24 hours. Let’s just give him/her half a day of CONSTANT, CHRONIC pain. But no pills, no pot, no booze, nothing. Then tell me how you feel.

I’d just like some pain relief. That’s all I’m asking! That’s all we’re asking.

And then let’s have this one person tell me if these laws are worth it.

Because what the majority of Americans think about pot? Is not true. We’re not all lazy potheads, who sit around doing nothing, eating bon-bons all day long (because heck, if you get stoned, you get the munchies, right?) Before prohibition, marijuana was legal. As a matter of fact, it was ILLEGAL NOT TO GROW IT! That’s right, the hemp used from marijuana was used to make rope, which was very necessary in the shipping industry.

So … a bunch of folks set out to make marijuana users be BAD PEOPLE around prohibition time. Unfortunately, that misperception stuck. All the way into the year 2014.

Well, let me shoot down those untruths.

When I was in college (oh yes indeed, I went through college, got a degree, made the dean’s list, was a member of Phi Theta Kappa, all while being high), my roommate mentioned something about stoners being lazy. “Really?” I asked? “They’re late, too. Never on time,” she said. “Oh?” I replied? I let her go on about her misperceptions.

“Have I ever been late for anything?” I asked. “No.”

“Do you think I’m lazy?” I asked. “Heavens no,” she replied! “You go to college, you work part-time.”

Well, guess what. I get stoned. EVERY DAY! Gasp!

Not only did I get that college degree (with honors), I worked every spare minute I could during college. After college, I got a professional position – where I excelled. And I still smoked pot. (I even went back to college to learn Spanish.)

Yes, I’m a stoner. And I’m not ashamed of it one bit. This marijuana is the ONE AND ONLY thing that has allowed me to survive the past 20-30 years. It has been my major source of pain relief. It was the only thing I could turn to.

A little bit about me: I am a professional woman, with a full-time, prestigious position, working almost 15 years for a world-wide company. I work with many folks who smoke weed just like I do. Some of us joke that if we had mandatory/random drug tests, our company would have maybe 3-4 folks left. The rest of us would fail that drug test.

We’re all UBER intelligent people. And we smoke pot.

Outside of work, I was on the Board of Directors for a non-profit agency for five years. I was the head of the Public Relations program. Still smoking pot. I helped our fundraisers go from $25k per year to $50k. I completed the annual fundraiser 100+ page catalog during the same time I was putting together my son’s school’s annual yearbook. Oh, by the way, I took all the pictures for that yearbook, too.

I hope you’re getting my point.

I’m not a lazy, no-good, good-for-nothing stoner. Not many of us are.

Lazy people are lazy people, whether they smoke pot or not. There are lazy people who smoke pot and lazy people who don’t.

But there are doctors, professors, lawyers, all sorts of professionals – respected members of society – that smoke pot. I’m one of those respected members. I’ve got a house almost paid off, I don’t have any bills outside of my monthly American Express card, which I pay off in full each month. I’m probably one of the most active parents at my son’s school. I volunteer regularly. I’m a good person.

You wouldn’t ever know by looking at me that I smoke pot. I have a lot of friends who don’t know I do. Because it’s still a bad thing … in their heads.

But not in mine. I know that I’m not a criminal. I’m a thriving individual that gives back to my community, sometimes more than 100 percent. I’m an overachiever. And I smoke pot.

So here I sit, writing this manifesto, marijuana free for an entire week. And I’m in pain. Bad pain. But in order to get that prescription for those 5 mg pills of codeine, I can’t get that other pain relief. Like I said, it’s a serious decision. Get some relief now? Or pay for it later with a failed drug test. So I remain pot free.

Pain, pain, pain, pain, pain. Pain, pain, pain, pain, pain. Imagine your brain repeating that every second you’re awake. Imagine being in constant pain. With no relief. Can you?

Because I’ve been a “chronic” user of marijuana for I’ve lost count how many years, it could take up to 12 weeks – or more – for me to pass a urine test. My next appointment with my rheumatologist is in a couple of weeks. I’m sure I’ll fail that urine drug test.

And I won’t be receiving any more prescriptions for hydrocodone.

That’s why I’m mad as hell.

Wouldn’t you be?

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Well … I feel much better now that this manifesto is written and ready for the world. I’m sure all of you (or at least some of you) understand why this is anonymous. I mean HEAVEN FORBID should I have to pee in a cup for my employer.

To see other Manifestos, check out the Daily Post’s Weekly Writing Challenge here.