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Party Etiquette for a Sassy Spoonie/ Missed Manners

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | Kim Legler

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile.

Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!

So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

Merry Christmas, happy holidays!

This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
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Pain Pills: Chronic Pain Sufferers Speak

"Pain Pills: Chronic Pain Sufferers Speak" #Pain #Meds #Health #Cancer #Spoonie Art Print by Flat Earth Designs on Etsy. Nathaniel Bibaud. "Pill Rat"

Flat Earth Designs: Etsy

There is a great debate in America regarding prescription pain medication. From someone who hears this issue from fellow chronic pain sufferers regularly, we have a dog in the fight, too.

Those with chronic, non-cancer pain have been criminalized in the last 10 years along with their doctors because of the medications being prescribed…wait, no…flip that, reverse it. In the last 10 years, because of individuals abusing their pain medications, addicts buying opioids on the black market, and doctors over-prescribing irresponsibly, chronic pain patients, and their doctors have been treated like criminals.

Founding a support group for Complex Regional Pain Syndrome: known as the most painful condition one can endure, let me be clear that even people with the worst possible pain do not want to take pain medication. Why not? When they are screaming, crying, homebound and barely holding on, why won’t they take 1 tiny little pill? For one, they are afraid of becoming an addict! They are worried their family will think less of them. They are anxious that if their doctors prescribe it once and it helps, how will they ask for a refill without sounding like the “pill seekers” they hear about on television? Too many times people are nervous about taking their prescribed medication for severe chronic pain because of what they have seen on talk shows and read about on the internet.

Well, here’s something else to read…

A study in 2007 sampled 15,000 veterans with chronic pain (Edlund et al.). They were all given opioids, and only 2% abused his or her medications. I have read other studies like these for chronic and cancer pain in which the addiction or abuse rate is always extremely low. Apparently, people in excruciating pain, 24/7, every single day for years are managing his or her pain medication AS PRESCRIBED. This may shock some of those television personalities.

Why is it that those with chronic pain are much less likely to become addicted? In those without chronic pain, opioids cause a sense of euphoria. For those WITH chronic pain, the medication does not match or overcome the pain. A neuropathic pain study published in 2003 by the New England Journal of Medicine found that opioid pain medication only gave 36% pain reduction at the highest dose possible before side effects of the drug were intolerable. Those with such extreme pain continue to feel pain; therefore, how can there be a medicated euphoria? Maybe this is why there is a much lower rate of addiction in chronic and terminal pain.

Many of those I encounter are so conservative with their medications. They take as little as possible, even when pain is high. When pain is low enough to tolerate, most don’t take any pain medications. No one wants to take any type of medications. Those I encounter do what is available to them to manage pain: treatments, therapies, procedures, etc. Pain medication is seen as a means to an end. A short-term negotiation until there is a better pain relieving strategy. But for many, it is a necessary part of living, coping, and functioning with painful neurological disease.

Doctors who treat chronic pain exclusively are held to increasingly high protocols by the government. There are more changes all the time concerning how they can and cannot care for their ailing patients. With more government restrictions, more paperwork, more required seminars for doctors and nurses… Do you think MORE attention and time is being given to patients, or less? If you are a patient who sees a pain management specialist, you would be expected to sign a patient contract. The doctor has communication with your pharmacist, and you would be expected to furnish monthly urine and/ or blood depending upon which state you live in. Because of the current climate regarding these “controlled substances,” those with painful chronic illnesses like RSD, Peripheral Neuropathy, and Trigeminal Neuralgia who go to a hospital for an emergency may be treated like a criminal until their pain doctors can be contacted. Imagine if you were the one having a medical emergency!

Just a side note, in my research I learned that a doctor’s office can be thought of as a “pill mill” if 50% or more of its patients are treated for pain management, even if they offer physical therapy, biofeedback, counseling, acupuncture, interventional pain therapies, etc. If the doctor is chief at the local hospital, she still runs a “pill mill” up the road because she primarily treats people with chronic pain or cancer pain. Nice, right? CDC Pain Clinic Regulations

Whether you are judging someone else with chronic pain for taking pain medication, or if you are judging yourself because you think it means you are somehow weaker for taking your meds, please ask yourself a couple of questions. If you had another condition… cancer perhaps, would you feel guilty or like you had caved in by starting on the prescribed chemotherapy protocol? If you had diabetes, would you deprive yourself of your insulin, only taking half the dose, when you are on the verge of going into a diabetic coma? Do you feel shameful about the other medications and treatments you are being prescribed currently for pain?

If you are taking your medication as prescribed, then is your concern about becoming addicted, or is it the social stigma you worry about? For those judging, if your sister, son, or elderly grandfather were suddenly touched by crippling degenerative neurological pain, wouldn’t you want them to have the best Quality of Life possible while they explore ALL available treatment options? If every treatment they tried in the next 5 years failed to help, but you knew pain medication would keep them functioning through the pain, would you still want them to suffer the next 5 years without pain medication?

Pain medications can be dangerous, yes! They ABSOLUTELY should be taken with caution, with respect, and with the same seriousness with which you regard your disease. Along with all of the voices yelling about the pain medication issues, people who have chronic pain tend to have quieter voices, but please remember, we are still speaking.

**********

More resources:

DEA Rescheduling Hydrocodone

The Doctor’s Dilemma: opiate analgesics and chronic pain

How Does Chronic Pain Management Work?

art print by Nathaniel Bibaud. Flat Earth Designs on Etsy.

“Pill Rat”

Flat Earth Designs on Etsy. “Pill Rat” art print by Nathaniel Bibaud.

Thank you so much Nathaniel. Go buy something awesome from his shop!

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