You Don't Know Me!

I really hate the Angry Pharmacist. The Angry Pharmacist hates his customers. Just hates them. It's really obvious. Which is why this piece of advice to doctors scares me:

Want to know the scoop on a patient? Ask us! Patients will tell you what you want to hear so you’ll give them an Rx. However we see when they are getting their refills, who they go to, and how they act. The patient that complains of a 10/10 low back pain to you may waltz into the pharmacy like nothing is wrong. You may not see how your patients act outside of your office, but we do. We usually see your patients enough to get a good gut feeling if something fishy is going on with them. If we don’t know, then their insurance company computers can tell us if they have been naughty or nice (like Santa!).

[emphasis added]

Sure, during the 1 minute and 30 seconds a month we spend together, you can tell more about me than the doctor that's been treating me for years. And he should totally listen to your reporting of my pain over mine, because I'm a junkie whore and you have an Rph after your name, which apparently grants you psychic powers.

If you are dependent on painkillers to live your life, and I don't mean addicted to painkillers, I mean your pain is so intense that you need powerful narcotics to walk across a room (assuming you can still pull off walking), you know why this scares me. (Hi, denelian!) As bad as my days are, they'd be a whole lot worse without vicodin. I know because I wake up that way and it sucks. I sometimes end up crawling to the bathroom to pee first thing. Now imagine that being all day long because some angry, self-absorbed, megalomaniacal asshole decided they know me better than anyone because they saw me walk 30' without screaming in agony.

First of all, showing pain and discussing pain are verboten in American society. It is unseemly to display pain. It is rude to talk about it. Don't make a scene. Stop bothering me, jeez. So, no, I'm not exactly inclined to humiliate myself by displaying my pain for all the world to see, and that includes you, Pharmacy Asshole.

Secondly, I rarely limp, it's true. I rarely limp because a physical therapist once spent some time explaining that any gait change is very bad for your body and that limping to relieve the pain in my hip would lead to pain in other places (and wouldn't really do anything for my hip anyway). The last thing I need is more pain, so I suck it up and walk straight. It's painful, it's pure force of will, I don't know how long I'll be able to keep it up, but it's not waltzing. Fuck off.

Thirdly, the 10 point pain scale is bullshit. It's ridiculous. It makes no sense. Ask any chronic pain patient about the 10 point pain scale and you're likely to be dealing with frothing at the mouth within 3 seconds. It's that fucking stupid. I know 10 is supposed to be "worst pain you can imagine", but I can imagine being on fire and how likely is that to come up? (Plus, just guessing here, I don't think I would be asked to quantify my pain were I to see a doctor while actively on fire.) So when I am asked to quantify my pain, what I say is "my pain is for real. It's affecting my mood, my outlook on life, my ability to do the things I need to do and I need you to do something about it, because that is your job." Then the doctor looks at me funny and I say, "9.5. 8 on a good day."

I really hate this shit. I hate going to the pharmacy to pick up a legally prescribed, valid prescription for a real medical condition and knowing that the people behind the counter are judging me based on that alone- and maybe they'll make a phone call that will leave me unable to live my life. So I try not to sound eager, but not too fakely disinterested, nice, but detached because too nice is a junkie's trick, educated, calm, etc. It's ridiculous. It's a prescription, give it to me and stop fucking judging me.

Mai Brane Went Erk!

I think I just experienced physical cognitive dissonance. It was very weird.

(Keep in mind, I don't see my knees very often. For 8 hours a day I'm either sitting at a desk or walking somewhere, neither being activities that really allow for knee monitoring.) It's been raining, for days. This sort of weather isn't good for me. It makes my joints ache as if I spent my time on a rack rather than in a chair.

Lately, my knees have been feeling swollen. This morning, it reached the level of feeling like my knees are the size of cantaloupes. It finally got to the point where I looked at them to see what was going on. (More like, holy fuck what is going on with my knees?!)

That's when my brain went erk. "Erk" is my best approximation of the actual sound inside my head when I saw that my knees were perfectly normal and my brain shut down. I think my autonomic functions may have stopped for a few seconds. The sheer disconnect between what my knees felt like and what they looked like was just too much to process and my brain hung up like Outlook trying to download an email with an attachment*. Then my brain did this:

Brain: Touch your knees.

Me: What?

Brain: Touch your knees.

Me: Why?

Brain: They're swollen. I can tell. Touch them and check.

Me: Look at them, they're fine.

Brain: You can't trust the eyes. Touch your knees.

Me: My eyes are fine.

Brain: You are wearing red glasses so bright I'm surprised they haven't burst into flames, can you see them?

Me: Well, now I can. Thanks for that.

Brain: What about your nose? Do you have any idea what I have to do with the information from the eyes to make it usable? The eyes cannot be trusted.

Me: You know, this is a really disturbing conversation to have with your own brain.

Brain: I wouldn't know, I am your own brain. Touch your knees.

Yeah, they feel fine, although my hand passing through where the swelling should have been felt like picking up a can of soda you expect to be full that is empty instead. I'd call the doctor, but I wouldn't even know what to say. And my brain's sulking at me now.

*Every single time those idiot computer repairmen stop by, it gets worse. I've changed the password on my computer and refuse to give it to them.

Fads in Fashion Are Fine, but in Medicine?

If you've had chronic pain for the last decade, as I have, you know exactly what the title refers to. If you haven't, you probably think that fads are limited to fashion, music and social networking, but medicine is ruled by science.

Yeah, not so much.

Medicine is ruled by fads, and no, that's not good for the patient. Yesterday, I left my doctor's office with a prescription for Sevella. I've never heard of it, so I looked it up.

Milnacipran is not used to treat depression, but it belongs to the same class of medications as many antidepressants.

Sevella is an SSRI/SNRI, putting it in the same group as Prozac and Wellbutrin (Zyban if you're quitting smoking). When my pain first sent me to doctors for relief, tricyclic antidepressants were the fad, so I took Elavil. Fifteen days after starting Elavil, I tried to kill myself. After that came the first wave of the fad of treating chronic pain with SSRI/SNRIs. "But I'm not depressed," I protested and was assured that these new antidepressants had no effect besides pain relief if you weren't depressed. I can only assume my doctor got that line from the drug rep, because it's not true. My reaction was not unique. Prozac left me despondent, crying until I literally ran out of tears. Wellbutrin turned me into an avatar of rage and I found myself screaming obscenities at some poor guy named Tim when my cable went out. (Sorry, Tim.)

My doctor knows this, I've told him these stories in great detail. My file should have "NO ANTIDEPRESSANTS" written on it in red pen.

After that was the fad for Neurontin, an anticonvulsant. The drug reps were pushing it hard for disorders other than epilepsy, and doctors treating pain patients were delighted to play along, even though there was no evidence that Neurontin did anything for chronic pain. It didn't do anything for me, and my doctor at the time told me that Neurontin was the gold standard for chronic pain and if it didn't work for me, maybe I just liked narcotics too much.

Not one fucking study, no science at all, just a drug rep's assurances, and I was a junkie.

After that came Lyrica. It was a miracle! We would all be saved! I got so dizzy I couldn't stand up. "Wait for it to pass," my doctor said, "This stuff is worth it." I did eventually learn to walk somewhat straight, but my pain didn't go away. After six months, I gave up, but to this day, I still have balance problems, and if I turn my head too fast, I fall over.

Last year, right before my doctor's visit, I saw an ad for Cymbalta. "Here we go again," I said. "He's not going to give you that," my husband said, "He knows what happens to you on antidepressants."

As soon as he walked into the exam room, my doctor was singing the praises of Cymbalta. "Angels deliver it directly from heaven!" I'm paraphrasing, but he was pushing this stuff like the manufacturer had sent an assassin to his house and was holding his family hostage until he prescribed enough of it.

I'd had enough. I refused. He threatened to stop my pain meds unless I tried it. I took the sample pack- and then went home and threw it away. I told him it didn't work, but I had tried.

This year, it's Sevella and everyone's getting a scrip! Pink is the new black, belts are the new gloves and Sevella is the new Cymbalta. Here's a look at the side effects:

Milnacipran may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• nausea

• vomiting

• constipation

• stomach pain

• weight loss

• dry mouth

• feeling of extreme facial warmth and/or redness

• increased sweating

• headache

• dizziness

• blurred vision

• difficulty falling or staying asleep

• decreased sexual desire or ability

• pain or swelling of the testicles

• difficulty urinating

• rash

• itching

Would you prescribe that to someone who just got done telling you that they can't sleep and their gallbladder is sending them to the ER every three weeks? If so, you have what it takes to be a pain doctor- a fantastic commitment to fads and a sociopathic unconcern for the wellbeing of other people!

I can't wait for next year.

Disease and Desire- a Primer of Sorts

Holly of the Pervocracy (never, ever safe for work, but that's why I love her) has a great post today about sick sex.

No. It was like coming home. Back to the place where I'm desirable, desiring, fuckable, fucking. Back to where pleasure matters. Back to where bodies are wonderful beautiful things for joy and exploration. Back to being a person.

People- and by people, I mean doctors, friends, loved ones, lovers- get really freaked out by the concept of disabled/chronically ill people as sexual beings. Being disabled makes one, in the mind of others, occupy the same mental space as the elderly and children- sexless beings, or at least beings that damn well ought to be sexless, and if you're not, get on it, because nobody wants to think about amputees getting it on, okay? Yeesh.

Except that disabled =/= sexless. Assumed sexlessness is one of the worst things about disability. And orgasms are better for pain than dilaudid, and that stuff is like being hugged by the almighty, let me tell you.

I am not sexless. I have no desire to be sexless. I like sex. I like desiring and being desired. It's more difficult these days, and sex requires a bit more being careful of aching joints than I'd like, but that doesn't make me sexless. But try having a conversation with a doctor about sex and making sure I can keep having it. They act like I'm requesting they fix my ability to bungee jump or something equally outlandish and unnecessary. How sick are you, really, if you still want to get naked and crazy? seems to be the general implication, along with a hint of I can't believe you made me think about that. Ew.

So, anyway, for today, if you see someone disabled or old or whatever, force yourself to consider that that is a sexual being, too. That is an entire person who has all the same desires and desirings of the able and young and beautiful. Extra credit if you picture it and don't gag.

I Do Know My Limits

Starting today there will be a notable pause in posting as I go to the Wedding Extravaganza Amongst the Beautiful People(tm) (hereinafter referred to as "Wedapalooza"). Wedapalooza stretches over 2 days, is 4 hours away from me, will require 3 wardrobe changes. Day 2 will start with a lovely array of sporting events to choose from, in the South, in June, and will end in a "cocktail dress" reception. I'm sure you can imagine how very thrilled I am to attend.

From a financial standpoint, Wedapalooza is particularly cruel to the poor in the family, as it requires hotel stays and three new outfits per person, not to mention the traveling, but that's not what I'm blogging about. What I'm blogging about is what I will endure as a chronically ill person: that special ability the able have wherein they are better qualified to discern my physical state, needs and limits than I am.

If you are disabled/chronically ill, you know exactly what I am talking about. The gluten allergic person who refuses food that will make them violently ill is accused of being rude to the cook. The pain patient who excuses themselves to lie down after a too-full day is being lazy or rude to their companions. The person with social anxiety who needs to separate from the crowd in order to stay calm is being ridiculous and needs to get over it.

I live in this body. I have for over 34 years. I am not new to this illness. I know what I need. I know what I need better than anyone else. I know my limits and I sure as hell know when I've gone past them. If I say that I need to rest, that has everything to do with me and nothing to do with you. I am not being rude, I am not being lazy, I am not being selfish. I am doing what I have to do to maintain my health.

I'm sick of being told that I am "no fun" or "ridiculous" or "jeez, it's always something with you!" Yeah? You think it's rough being related to me? Try actually being me. Try it for 5 minutes, I dare you.

Try to imagine, if you will, that you are on a car trip, as a passenger. You have to pee. You tell the driver that you need to pee, please pull over at the earliest opportunity. Imagine that the driver tells you that you are being ridiculous and rude and you need to get over it. That's what I feel like.

So, trust me, I know how I feel, I do know my limits, and you need to respect that.

Enraging and Stupid

You know how you can tell that someone isn't disabled or chronically ill? They go on and on and on about "natural cures" and "your body knows best" and "you should stop taking that medication". Yeah, "stop shoving chemicals* into your body!" seems like good advice- until you get sick and those chemicals are the only thing that allow you to move or work or stay alive.

Unplugging From Your Medicine Cabinet: Respecting the Body's Intelligence

It may be time to go on a special type of vacation: a drug vacation.* A drug vacation is a time in which you reduce the doses or eliminate entirely whatever drug or drugs you are taking. A drug vacation may give you (and your doctor) an opportunity to learn whether you really need to continue taking this drug or not. More important, this vacation will give your body an opportunity to manifest its everyday self-regulating and self-healing propensities without the crutch of a pharmaceutical agent inhibiting or suppressing its important work.

So, what, your doctor is just giving you drugs at random, in random doses and random combinations with no idea at all what you need? Presumably, you started taking medication to help with health problems you were having. If the medication worked, you kept taking it, if it didn't, you stopped or switched. If your medication is working for you, why stop taking it?

What really pisses me off is the idea that everyone would be perfectly healthy if they'd just stop taking their medication. Hey, spleenweasel! If my body were capable of self regulation and self healing, I wouldn't be taking medication in the first place. How fucking stupid can you be?

IF you are ready, step away from the medicine cabinet. You may not even recognize it, but you may be addicted to one or more of the drugs there. It may be time that you received an intervention, though this time, you should probably intervene on yourself rather than have anyone do it for or to you.

You may have noticed but your body has become accustomed to these drugs, and you've probably have had to increase the dosage over time, though you probably also noticed that various weird symptoms emerged when you did so. You then probably chose to increase it on some days and decrease on other days, in the hopes that they will still work, though some people may wonder if they are really helping or not.

Ah, addiction. I do so enjoy, as a pain patient, a discussion of addiction. First of all, addiction is a psychological process. What the writer seems to be referring to is dependency, which is an entirely different issue. After all this time, I am dependent on pain medication, but then again, I was dependent on it from the first pill I ever swallowed because I can't move without pain medication. Hell, with the pain medication I have days where walking 15 feet to the bathroom is the impossible dream. I would be rendered entirely disabled without pain medication. Oh, well, I guess as long as I'm not inhibiting my body's complete inability to heal itself.

There it is, isn't it? The blame that whispers through this entire article: It's your fault you're sick. If you would just stop taking chemicals, you'd feel better. If you'd just listen to me, you stupid, stupid sick person, you'd be fine. Your doctor? Why would you listen to him? He's got schooling and experience, I've got woo.

GAH! I hate these purveyors of woo.

The rest of the article is trying to sell me homeopathy, the idea that less is way more, but that's been dealt with a few times before. I just wanted to explain what this attitude- drugs are bad! stop using them!- sounds like to the chronically ill/disabled. It sounds like you think you know better than me. It sounds like you want me to suffer.

*I feel like shouting, "You know what's in your water? Dihydrogen Monoxide!" Everything's a damn chemical, get over it.

pic link

Disabled Dating

disability, disability, chronic illness, dating, love, stupid, asshat,
I've thought of a few more rules for when I am Empress of the Entire Freakin' World (the business cards will be so cool!). No one will be allowed to write about disability or chronic illness unless they have a disability or chronic illness, or if they receive a special dispensation for me. Most people will not get those dispensations, including Brian Alexander at msnbc.com.

An Internet entrepreneur named Ricky Durham believes he has the answer to
Valentine’s Day loneliness for people living with chronic diseases or health conditions: match them up with other
people who either have the same conditions or are, for some reason, looking for
a lover who has them.

I cannot imagine dating. I just can't imagine it. Exactly when does one bring up their disability/chronic illness? "So, I'm a Saggitarius, I really like video games, and I can't stand in place for more than 30 seconds, can't lift more than 5-10 lbs and will never be able to have children. Oh, you just realized your house is on fire? You'd be surprised how often that happens."

This is, btw, the reason I have very few IRL friends. Most healthy people don't get it. I never know how I'm going to feel day to day. Some days I'm perfectly capable of going out to dinner or watching the game. Some days I'm barely capable of getting to the bathroom. So, I make plans for Saturday, and Saturday comes and I can hardly move and the pain has made me mean and I cancel. A few people are willing to put up with that, but most aren't. I can't imagine trying to explain that to a date.

So, yeah, why not try to find someone who is likely to understand your particular difficulties? If you did the above to me, I would totally understand. Let's try again another day, in the meantime, would you like me to call you later or stop by with something to eat? Not everyone will have that reaction.

But, oh, no, those silly sick people don't know what they're getting into! Mr. Alexander needs to set them straight.

Her experience did not surprise Miller, the psychologist at Fox Chase.
Often people with long-term health conditions are so pleased to simply find
somebody they like who understands the inconveniences and challenges, she said,
that “there is a very strong risk of overlooking things you should not
overlook.”

Cancer survivors, diabetics, people with psychological disorders —
anybody dealing with a chronic condition — can come to see that condition as the
main thing in their lives. “Your sense of self is so wrapped up in your physical
condition that becomes the main barrier to connecting with others. It becomes
your new identity," said Miller. "But it is just one piece of your overall
personality and your needs.”

The other person may have the same issue you’re facing, but is he or
she an extrovert while you are an introvert? Messy while you are neat? A planner
while you are spontaneous? We are more than our diseases.

And how is that different from any two people, healthy or not? Of course one point of similarity does not a relationship make. Nobody is suggesting that simply sharing the same race, love of Depeche Mode, or vegetarianism is enough to base a lifetime on. However, it's not a bad place to start. If you're a vegetarian, and watching people eat meat ruins your night, why not only look amongst other vegetarians for love? Is anybody chiding vegetarians for sticking with other vegetarians? No.

Also, I know that chronic pain isn't the only thing about me, but it does affect every other part of me. There is no facet of my life or my self that has not been impacted. If you have not been impacted this way, you really cannot understand. I say this not to offend or hurt my healthy friends, you are great and I love you, but you truly do not know what my illness has done to me, for which you should be eternally grateful. I fail to see where starting a relationship with that level of understanding is a bad idea.

And then we have this:

Imagine the possible financial consequences of, say, two bi-polar people with a
penchant for big spending during manic phases falling in love. Genetics are also
a consideration. Many long-term conditions like depression, some cancers,
Crohn’s, some auto-immune diseases and others, can involve inherited genetic
risk. The children of two parents who both have Crohn’s, for example, have a
greatly elevated risk of having an inflammatory bowel disease themselves.

OMG, what if two stupid people got together? What would be the consequences then? What about racists- can you imagine? Seriously, wtf?

Has Mr. Alexander never heard of birth control, genetic counseling or adoption? Does he think that the disabled/chronically ill among us aren't quite aware of the risks of reproducing? Does he think that healthy people don't produce less than perfect offspring? Down's Syndrome anyone?

I think we should prevent Mr. Alexander from breeding on the chance that patronizing condescension is genetic.