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

It Stinks Around Here

While no leisurely time to post lately, I’ve read way too many horror stories about the way people have been treated trying to obtain pain prescriptions for their LEGITIMATE pain. I know in my case, the fibromyalgia is an invisible disease, as you certainly cannot look at me and know that right now, I’m almost in tears, I hurt so much. But my doctor can tell, MRIs and Xrays don’t lie. A neck fusion surgery doesn’t lie. Getting Toradol shots, going to physical therapy, weekly massages, they all don’t lie. Pain doesn’t lie. WE DON’T LIE. I’d like to suggest, if a doctor cannot establish enough of a rapport with his/her patient to be able to discern whether or not their pain is REAL and very much PAINFUL, then that doc isn’t worth a darn. I’d also like to suggest that if a doctor is more fearful of the DEA and says, “I’m not writing you a prescription because I don’t want to lose my license,” and won’t treat YOU – the PATIENT – it’s time for the doctor to put away the pen and the prescription pad. Yep, close your doors. Find a different way of life. Just like some like to say, “snap out of it!” I’d like to counter, if you really think that I could just snap away my pain, why in the heck didn’t I just do that years ago?!? Do you think I’d like to remain in pain? Oh heck no. No, no, no.

Do you think my pain will ever end? Nope, no matter what the pain pills are, the pain is NEVER LEAVING. My fibromyalgia will never improve, it will never leave, it will ALWAYS BE WITH ME. Yep, my constant unwanted partner, my ever growing pain, right along side me for the REST OF MY LIFE. I try not to dwell on that, just reading it is depressing. deep heavy sigh

So, with that said, I’d like to suggest to all: don’t EVER judge a person by their outward appearance. Just because you can’t see fibromyalgia written all over me, I have a real disease, with real pain, that really sucks. Treat me with compassion, and please, please don’t suggest that “a little exercise will make you feel better,” “have you tried Tylenol PM?” (oh my, my eyes just dropped out the back of my head), or “you’re going to become addicted to those!” If I had eyes in my sockets, they’d fall out again. I’m not asking you to feel my pain, just to treat me like you’d treat anybody else.

Because I? Am way stronger than my pain. But I? have a very low tolerance for bullshit, which unfortunately, those of us in chronic pain? We get way more than our load of crap.

… I don’t know any way to end this than to say, “Gosh, it stinks around here!”

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.

My “Dear Doctor” Fiasco Horror Story Turns Happy!

Since I began this blog just a little over two weeks ago, I have learned so much from not only my fellow bloggers, but from Twitter folks, and especially from Facebook groups dealing with chronic pain and/or fibromyalgia. I have learned that we all have the same stories, just our symptoms differ. What we all have in common are horror stories about how we’re treated by either the medical community, some of our own doctors, pharmacists, and even family and friends. On the other hand, I’ve also learned that we all share hope, concern, compassion, and care for one another. Thankfully, the good always outweighs the bad. And hope always, always prevails.

So if you read my last post, the letter that I wrote to my rheumatologist, you might be wondering what happened. I was so nervous to approach her, because I had only seen her twice. Both times, she typed in her computer, rarely making eye contact. Although she was helpful in explaining certain things, and changing some of my meds, I should have trusted my gut instinct: that I really didn’t know her, and thus, to tread lightly with what I’d tell her. But I’m an honest person. I went to my appointment and proceeded to read her the letter. Halfway through, I started crying. She continued typing away, she didn’t say anything until I was finished.

“I can answer some of your questions,” she said. “No, I do not support the use of marijuana in any sense, and not for medicinal use. Furthermore, if medical marijuana is passed here in Florida, I would never prescribe it.” She then proceeded to shame me for my use of marijuana, and that if I had a dirty UA after this initial drug test, that she would kick me out of her practice. And, I would be drug tested every 2-4 weeks continually, regardless if my next screen came up negative. Why didn’t I tell her initially? Well, I didn’t know her! But I’m coming clean now.

“There is no reason you shouldn’t be clean after three weeks of stopping,” she said. She said that more than once, insinuating that I was lying. So the result of that letter was: no prescription for my meds, and a thoroughly detailed (I’m sure) account of my letter in my records. Remember, she typed the ENTIRE time. When I told her I had an appointment with a pain management specialist in December, she told me that under no circumstances would this other doctor treat me with THC in my system. I MUST swear to her that under no circumstances would I continue my use. I said I couldn’t do that, although I would continue not using it in order to have a clean UA. I continued to explain that what she was prescribing wasn’t even cutting down on the pain, so why should I promise not to use the other, if it DID help? She mentioned that the pain doctor COULD prescribe other meds, which WOULD help me. In that case, yes, I’d be willing to continue not using marijuana.

I left her office in tears, totally struck down. I continued to cry all day, feeling lost and without any hope. If she wouldn’t even prescribe Tramadol (which is now a scheduled drug, too), what could I do? How in the world would I get any relief ever? But several hours after swollen eyes and a crushed soul, I thought, I really need to talk to my own primary physician and tell her what happened. After all, I have a rapport with her, I can trust her, I can talk to her. In the evening, I had to take my son to an appointment, and it just so happened we were talking to a psychologist. I mentioned to her that I had fibro and had a really crappy day, I was in tears again. After my son left the room, she said, “I want to know about your fibromyalgia. What is going on?” So I proceeded to tell her the nightmare I had just lived.

“How DARE that doctor treat you like that?!?” she exclaimed. “She had absolutely no right to shame you that way. As a doctor, she NEVER should have treated you that way!” I told her I had an appointment with my primary the next day. She suggested that I start my conversation with, “I have something I really need to talk to you about, but I need to do it ‘off the record.'” She said if my doctor was keen, she’d know what I was talking about (the marijuana use). I said that I believed I could be honest with her without repercussions, unlike with that other doctor.

Long story short, my primary physician spent an hour and a half talking to me. She was indeed receptive, indeed compassionate, and never once did she make me feel like a drug addict like that other one did. I even asked her, “In all the time that I’ve been your patient, have I EVER given you the impression that I’m a drug addict?” She shook her head no, and said, “absolutely not.” Furthermore, she too, said the other doctor had no right to treat me like that, to insinuate that I was lying, and that I should end my patient status with that practice.

My doctor had no problem taking over my care, that she would be able to prescribe everything that the other doctor did. She would not subject me to drug tests, and she commended me for my honesty. I think she learned several things from me, because I told her some of the information I had learned. I told her about this blog, and how therapeutic it was for me to write. I think I’m a good writer, and I am touched when people tell me “this is me, this is how I feel, but you write it so well.” I am touched when I can spread some hope among us.

So even though my primary did not advocate my former use (or future use) of marijuana, she did express that if we could get me to the pain management doctor clean, that perhaps he could get me to the point where I wouldn’t feel the need to turn to the other. He just might be able to! And for that, I’m willing to be clean.

This all happened this past Wednesday and Thursday. I discovered that if I use my inner strength, that I can persevere through ANYTHING. And with a great primary doctor, I’ve got one in my corner cheering me on.

There IS hope. Spread the word!

P.S. I’ve continued my at-home drug tests, and after 27 days, I’m still testing positive. Even though I could use, I still haven’t. I’m kind of curious to see when I’ll be truly clean! Of course, when my lab tests return, I’ll know exactly how much was left in my system. How dare that other doctor insinuate I was lying! If she knew anything about marijuana use, she’d KNOW that it takes 1-2 months for THC to leave a “chronic” user. Sheesh, I know more about it than she did. And THAT? Is a shame.

Chronic Pain Sufferers Suffer Even More Now

The DEA recently changed Hydrocodone to a Schedule III drug, making it even more difficult for chronic pain sufferers to obtain the pain medication they NEED to survive in the United States. When we take pain meds – even every day – we are not drug abusers. Why? Because the pain meds actually TREAT the pain and allow us to function. It’s the abusers that messed it up for us. If you take pain meds and you’re not in pain, yes, you will feel “high.” But not so for us.

Now we must go to our doctor to pick up our prescription – and only WE can go (no-one else). Then, most likely, we have to take a drug test in order to pick up the script. At the drug store, we have to show our identification to pick up the medicine. Our information is entered into a drug database. In short, we are treated like drug abusers and/or criminals. And these drug tests? You have to take them even if you haven’t shown ANY SIGN of drug abuse. That’s just not right.

A lot of folks in pain use marijuana, which is a natural pain reliever. It aids sleep naturally, which is so very important for fibromyalgia sufferers. If we cannot sleep, our condition worsens.
So imagine the frustration we face. If we use marijuana, we have THC in our systems for days – or weeks even – and thus, have a positive result on the drug tests. So then the doctor refuses the pain medication.
Imagine if you had to pee in a cup to receive blood pressure medicine. And a positive result meant you wouldn’t get your meds. You could have a stroke and die. So you tell me – is this fair? It surely isn’t. Why are we treated any differently?

Join me in our fight to get the help we need. That includes #medicalmarijuana. Educate yourself. This PLANT has been used for almost 5,000 YEARS as a natural remedy for MANY ailments. It was a negative spin made in the early-mid 1900s that changed the views about marijuana, and made users look like criminals. I can assure you that the “typical stoner” image most people have is INACCURATE. If you think people who use marijuana are lazy or stupid, don’t have any motivation, and eat munchies all day, you are WRONG. Lazy people are lazy, regardless if they smoke pot or not. We users are professionals, we are responsible adults, we give back to the community, we are GOOD PEOPLE.

I’m in pain. Serious pain. I want help. I don’t get the help I need. I’m treated like a drug addict. Is this wrong? I think so. If you think so, too, help me spread the word. It’s about time we #legalizemarijuana and stop wasting taxpayers money on the “war on drugs,” which has literally pissed away our money. According to recent polls, 88% of Floridians support the initiative to legalize marijuana. I would be there are about 88% of us who use marijuana – in the USA – where supposedly we are free. REALLY?
Think about that.

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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