Author Archives: Eilonnwy

Unknown's avatar

About Eilonnwy

Butch Lesbian - Disabled - 36 - USA

On the “Irrationality” of Pain Patients

Posted on by
Reply

Way too many doctors forget about the human behind the patient. They see a problem to solve, and bristle when those problems don’t uncritically accept their diagnosis and treatment, or lack thereof. They have to maneuver around annoying things like a person’s religious beliefs, distrust of medicine, or god forbid a desire to be a functioning human being despite their illnesses.

A recent op-ed was published in JAMA Internal Medicine entitled “Centers for Disease Control and Prevention Guideline for Prescribing Opioids, 2022—Need for Integrating Dosing Benchmarks With Shared Decision-Making.” Quite a mouthful, but nothing unreasonable on the face of it. No, you have to dig a little deeper and read the text to find the ignorant drivel of doctors who have no interest in understanding their patients.

The opinion piece is about the implementation of using something called the Shared Decision-Making method, where patients and doctors work together to make a treatment plan for their condition. That sounds perfectly fine to me. However, according to the authors, it is a problem to use it with people taking prescription opioids.

The reason? We’re irrational, of course.

Shared decision-making can provide a crucial first
step in patient engagement by clarifying the patient’s
perspective and enlisting patient agency in health pro-
motion. The value of SDM has been recognized for many
years but also has its limitations, including where pa-
tients make irrational or short-sighted decisions. 6 Ac-
cording to a recent review by Montori et al, 7 SDM is not
just about clinicians helping patients select the best evi-
dence-based treatment option but rather, “The patient
and clinician must collaborate to arrive at a useful for-
mulation of the problem.” Often, patients consider pain
intensity reduction as a necessary first step in chronic
pain treatment, but this is not consistent with the most
recent evidence.

Centers for Disease Control and Prevention Guideline for
Prescribing Opioids, 2022—Need for Integrating Dosing
Benchmarks With Shared Decision-Making by Mark D. Sullivan,
MD, PhD; Jeffrey A. Linder, MD, MPH; Jason N. Doctor, PhD

According to Sullivan, Linder, and Doctor, patients in pain have a desire not to be in pain and this makes us irrational in having a say in our own health and pain management. We also have the silly notion of wanting to address our severe pain before getting to the underlying problem. Coming from doctors who I can confidentially say have probably never been in an ER screaming in agony in the worst pain of their life and desperately crying for a moment of relief only to have doctors refuse to treat them because they assume they’re just a drug-seeking addict. I could be wrong, but I don’t think I am.

Every person has experienced some level of excruciating pain one way or another. Whether you touched a hot stove, had a migraine, broke a bone or stubbed a toe, we’ve had moments of agony. It is a universal and human reaction in these painful moments to not want to be in pain. Pain is overbearing and all-encompassing. You can’t think in severe pain and you certainly can’t function normally without relief. It is not irrational to need that to stop before taking on treatment like physical therapy.

The op-ed refers to a study that says pain treatment and improvement doesn’t require pain reduction to come first. Maybe that is true, but so what? Just because people are able to heal in severe pain doesn’t mean they should be required to do so. What is wrong with allowing people to recover from injury or illness in less pain? The notion that healing doesn’t necessitate pain relief likely doesn’t take into consideration the psychological toll of prolonged pain. Also, it’s not always about what is precisely accurate but what the humane and ethical thing to do is.

I personally am still in pain from foot surgery but I have made lots of progress in healing. Without the pain relief I received from opioids, I would not have been able to follow through on the physical therapy and make the progress I have made. Maybe I could have made the progress without pain relief, but why should I be forced to do so? I certainly don’t hold to the notion that enduring pain is some noble quality. Especially since I’m in pain from other illnesses and, despite my opioid use, I’m always in pain, struggling to just function every day.

We endure pain when we have to, but I think a lot of people’s notion of “have to” prefers everyone just suck it up always.

Fortunately, we have medicine so that people don’t needlessly have to endure excruciating pain from broken bones, surgery, and other painful diseases. Opioids have risks but we understand them well and I think it’s possible to communicate those risks. I’m not pretending opioids are safe and anyone in pain should have an all-access pass. However, we need to be able to talk to our doctors about pain relief options without doctors thinking our desire for pain relief is irrational or that the effects of a medication exempt us from a say in our care. Would these same doctors tell a person with cancerthat they’re irrational for wanting not to have cancer anymore? Because that’s genuinely what it sounds like here.

Of course, none of this even considers the reality of lifelong chronic pain. I will never not be in pain from fibromyalgia, a herniated disk and more. According to this op-ed, I’m irrational for not being able to see a fulfilling life without some measure of pain relief.

(4) although patients with chronic pain are
not usually at imminent risk of death, they often can see
no possibility of a satisfying life without a significant and
immediate reduction in their pain. This induces a sense
of crisis that shortens the time frame considered in
decision-making.

Centers for Disease Control and Prevention Guideline for
Prescribing Opioids, 2022—Need for Integrating Dosing
Benchmarks With Shared Decision-Making by Mark D. Sullivan,
MD, PhD; Jeffrey A. Linder, MD, MPH; Jason N. Doctor, PhD

The callousness of this sentimentand and lack of understanding is breathtaking. When you are suffering from severe amounts of pain, you have every right to want that pain to end as soon as possible.

Furthermore, life with chronic pain is a life where you constantly have to say no to social engagements because you’re in too much pain. Where pushing yourself to go out for a day or two means you are in bed for the next 3 days straight. Where you can’t pick up and hold your niece and nephew because it hurts too much. A life where you can’t work anymore or participate in your favorite hobbies that you practiced for years. Things that were enjoyable like reading a book become harder because of the pain that won’t leave your mind and body. Sitting and watching people have fun that you know you can’t join in or it will hurt for weeks.

You just exist, clinging to whatever few things you can still do to feel normal. How irrational of me to want to have a life that’s more than just existing.

They also claim there is no study to show the efficacy of long-term opioid use, but fail to mention why. It’s considered unethical to give someone in severe pain a placebo for a long time. It’s also true of all pain medications for the same reason. Funny how they tend to leave that bit out of their denouncement of long-term opioid use.

While there may not be a study showing long term use of opioids is beneficial, there are still anecdotes. Many many many anecdotes. Given we can’t get that perfect study, they count for something. But, oh right, we’re probably too irrational for these doctors to possibly accept our shared experiences. Still, Opioids are beneficial in the long-term for me, if anyone was actually wondering.

Luckily, I’m not the only one disagreeing with this article. Here’s part of a response entitled “Opioid Dosing by Primary Care Professionals — A Call for Humility”.

Sullivan et al disagree with this change in the CDC recom-
mendations. They argue that some long-term opioid users
are not reliable partners for shared decision-making because
they cannot accurately weigh the risks and benefits of opi-
oids for chronic pain, at least in part because of the effect
of long-term opioid therapy on their ability to make good
decisions.
We recognize that some readers may strongly disagree
with the arguments in the article. Explicit dose and duration
limits have been blamed for drug overdoses with illicit sub-
stances, as have rigid state rules and insurance denials. Many
will also disagree that patients using opioids are not capable
of robust shared decision-making. Primary care profession-
als generally highly value the inclusion of the patient’s per-
spective in decision-making, consistent with the principles
of patient autonomy and self-determination, and are loathe
to go against a patient’s wishes.
If nothing else, the practice of primary care teaches hu-
mility. Care of a patient with chronic pain is among the hard-
est issues we deal with. As primary care professionals, we have
found it helpful to tell patients that it is not recommended to
take more than a specific threshold of opioids and that we
do not want to prescribe something that is not recom-
mended. However, that does not mean sticking to rigid cut
points for dose and duration of opioid use, abandoning pa-
tients, or having them undergo too rapid a taper.

Opioid Dosing by Primary Care Professionals—A Call for Humility by Mitchell H. Katz, MD; Deborah Grady, MD

In this rebuttal, Katz and Grady acknowledge that hard limits and forced tapers have forced some to turn to illicit substances. They also argue that you can include pain patients in the discussion of their care and make them aware of the risks. I can say this has been my experience with my current pain doctor.

There’s nothing wrong with trying to figure out better ways to use opioids in ways that are as effective and safe as possible. However, this op-ed by Sullivan et al really doesn’t suggest anything new, especially when it comes to peddling alternative therapies that range from minimally effective to straight up pseudoscience. Sorry, there’s just no comparison with pain relief when it comes to opioids.

It is also a bit ironic they are worried about drug diversion, when opioid supplies have been intentionally held back and shortages are causing patients to go though unnecessary and awful withdrawals. I recently had to go though withdrawal because of a prescription mixup for half a day and it was exhausting. Your body doesn’t want to stop moving and everything becomes more painful, full of sensory overload. No one should be forced to go through that because the current problem of opioid death isn’t even primarily RX medications anymore. It’s illicit opioids laced with fentanyl. Everyone knows this but doctors like these continue pushing for stockpile reduction that directly harms pain patients.

Recently, I watched a documentary on Prohibition. There were lots of specifics I didn’t know, like how doctors would sometimes prescribe alcohol and had an exemption for this during prohibition. (Not enough to get really sloshed though.) Of those who drank during this time, they drank so much more that alcohol-related illnesses actually rose in numbers. I knew home brews and distilleries were made but I didn’t know that rubbing alcohol was poisoned deliberately to avoid its use as drinking alcohol. People drank it anyway. Many died.

I think most Americans agree that Prohibition was a complete failure. The film I watched repeatedly said that you can’t legislate morals, which I agree with. I would also say that you can’t legislate addictions either. Opioids are not the same as alcohol; they should not be recreational like alcohol. However, they are medically necessary to treat people in agonizing pain, whether it is from injury, surgery or disease. Doctors have an ethical imperative to treat their patients to the best of their ability, and that includes relieving pain.

The film also made the point that about 10% of the population has alcoholism, and prohibition tried to stop their behavior by stopping everyone’s access. To deny medication based on risk that has been measured to be anywhere from 10% to 1% percent of the population, depending on the source. That’s 90%-99% of the population whose medical needs are being ignored for fear of a risk that we have warning signs and treatments for. Is it really logical to deny people pain relief, or have people apply a morality to taking opioids that people have also applied to alcohol? Battling addiction is far more successful when you try to actually help addicts on their level instead of just condemning the object of their addiction and banning it. It just goes underground.

If restrictions actually worked, maybe I would not be so upset by op-eds like these, but they clearly don’t. The unforeseen consequences of Prohibition killed many people who did not need to die. The same goes for the opioid crisis. This crisis is claiming not only addicts, but pain patients too who have been forced off or tapered on their opioid medication. Maybe they committed suicide, have a medical complication due to withdrawal, or suffered an overdose on illicit opioids laced with fentanyl in their desperation for pain relief. Unintended consequences, I know, but I saw that one coming the whole time.

Lastly, let’s consider the source. The author, Dr. Mark D. Sullivan, much like us irrational pain patients, has his own biases and conflicts of interest. He has testified as an expert for Physicians for Responsible Opioid Prescribing (PROP), which has its influence on anti-opioid measures.

The 2016 CDC Guidelines were heavily influenced by PROP. When they came about, my state passed laws based on them that had a direct effect on my health. I was denied opioids for months for no good reason. I also cannot take the pain regiment that works best for me because the DEA doesn’t think I should be on two different opioids. And as mentioned before, due to the red tape around opioid prescriptions, I went into forced withdrawal for no good reason.

It’s clear to me that doctors who can put their name to sentiments in this op-ed do not see the full human being sitting before them in the exam room. We are not a problem to be solved, but a person to be helped. Relieving pain always helps.

Pride and Chronic Pain

Posted on by
Reply

July is Disability Pride Month in honor of the passage of the Americans with Disabilities Act on July 26th 1990. Any and all events held in honor of it vary by city and country, but it’s also a time for people to share their experiences of disability on social media. There is also a flag associated with disability pride.

By Ann Magill – Disability Pride Flag [ID – Dark gray rectangle with diagonal stripes in a soft green, light blue, white, yellow, and red.]

Much like it is for LGBTQ pride, there are a lot of different experiences under the disability banner. Whether your disability is physical or mental, visible or not, curable or not, and so forth; people have different reasons to feel or not feel pride in their disability.

For people who are born with disabilities, it can be an intrinsic part of who they are from the moment they begin to perceive the world. There isn’t a desire to cure themselves to be like other people. They love themselves and their disability because it is no less a part of them than their hands and feet.

For others, disability was thrust on them through incidents such as an accident or sudden illness. Some want to pursue a cure to end their suffering and to return to how things were before, and some will. Others have to accept their life has been changed forever and cannot feel anything good in regards to their disability. They can still find pride in how they persevered and changed for the better despite their disability.

It’s important to never forget that two people can have the same exact disabilities, but have experiences and feelings toward their conditions that wildly differ. So it’s important to also know you can’t just assume what kind of pride they feel in their disabled life. There are also more complicated feelings than just what’s listed here.

I have shared both these experiences of being born with and coming into disability. I was born with Autism and ADHD. I was diagnosed with asthma at age 1 and migraines as a teen. I experienced disability all my life, even though I didn’t know I was neurodivergent until about age 30, which is also when I started to be diagnosed with different types of new disabilities.

I would take a cure for asthma and migraines in an instant. However, my autism and ADHD are a different story. I could do without the executive dysfunction, but at the same time, it is core to who I am. I wouldn’t be the same person without it. There are things in my life that I am proud of and part of those achievements had a lot to do with who I am because of Autism and ADHD. It did cause difficulties too, but everyone has difficulties. I just needed to know what I was dealing  with to better be able to overcome some problems and cope with others.

Now, later in life I have become physically disabled to the point I cannot work. I am in pain every day of my life from fibromyalgia and a herniated disk. I also have difficulty walking and experience increased pain due to foot and knee problems too. Like my asthma and migraines, I would love to do away with these things. But I can’t, so all I can do is just persevere and adapt. Which, in turn, has fundamentally changed me as a person.

You can’t have chronic pain and not change on some level. Things you used to do easily become impossible. Dreams you had become out of reach. Everything has to suddenly revolve around your ever present pain. It slows you down, makes it hard to keep up with others. It makes you bitter for all the times you were having a good time but then pain got in the way. Sleeping is never the same and if you’re able to hold on to a job, it’s exhausting beyond belief. The only pride I can take in Chronic Pain is that I won’t let it stop me from seeing my niece and nephew grow up. There are other things I live for too, and take pride in all the things I am still able to hold on to.

These conflicting feelings don’t invalidate each other; nor do the different experiences. As a non-disabled person, you don’t have to completely understand our feelings and experiences, just at least respect what we say. As I said previously, people with the exact same disability have different and even contradictory feelings about their condition. We are not a monolith.

Furthermore, I don’t want people to look at me like I’m some sort of inspiration. I just want people to understand that telling me you would kill yourself if you were in my situation is not the compliment you think it is.

Why Does No One Seem to Care About the Deaths of Those With Chronic Pain?

Posted on by
Reply

This past December, a woman named Jessica Fujimaki died of complications from opioid withdrawal. Her doctor was suspended by the DEA for helping pain patients and she was unable to find another doctor to prescribe her opioids before the lack of adequate and necessary medication killed her. This is a fundamental example of why pain kills.

Photo by Bret Kavanaugh on Unsplash – [ID: Part of hospital bed with pillow and a blue blanket, pills and plastic containers in background.]

She is not the first. She will not be the last. Whether it’s suicide from lack of sufficient pain relief; overdose from using illicit opioids unknowingly laced with fentanyl; or death from complications due to withdrawal like Jessica Fujimaki — pain patients are dying. People continue to discuss overdose deaths from addiction, as they should, but the plight of the chronic pain community is overlooked so that only addiction related deaths are covered in the news.

How can so many people be dying and it doesn’t make the news? For starters, because of the nature of our condition we often have no energy to properly advocate for ourselves. I have tried to advocate for myself, but even what little I can do is so damn hard. The fact I can’t even post more here is just one example of this struggle.

A lot of addiction-related overdoses that make the news focus on affluent white people who had everything going for them until they had surgery and got addicted. While I’m not saying that can’t ever happen, the real story of addiction is a lot different, but rarely do they make headlines. No one wants to talk about the societal issues behind addiction and fact-based responses. It’s easier to just blame the pills and the doctor that prescribed them.

The unsaid reality is that the stories of a young girl dying of an overdose evokes a tragedy in the public that a chronic pain patient does not. In fact, I would argue that people can’t imagine living with chronic pain and think that maybe dying is for the best. I mean, Canada has come under scrutiny lately for approving euthanasia for their poor disabled citizens as opposed to the benefits that would make their lives far more livable.

Due to opioid-phobia, there are far fewer people willing to advocate for the chronic pain community. People have no idea what our suffering is like, so it’s easy to lecture us about alternative medicine or therapies that don’t work. Yes, our condition is tragic to many, as mentioned above, but still not worth getting decent pain relief. Better dead than an addict, right?

I’m so tired of this. I’m so tired of begging people to care and they just don’t. Meanwhile, the opioid crisis is still framed as a prescription crisis when it is entirely about illicit fentanyl now.

We are being punished for being in pain, and our deaths are entirely forgotten. Because why would anybody care about a poor nobody home-bound and living off disability with no hope of working again?

Better off dead? No. A life worth living. I know because I am still living it.

Ridiculous Pharmacy Policy Around Opioids Caused Me to Go Through Needless Painful Withdrawal

Posted on by
Reply

It is completely normal to become physically dependent on medication and go through withdrawal from its absence. Withdrawal from opioids is most stigmatized, but many drugs cause this unpleasant effect. Anti-depressants come to mind, as well as the everyday cup of coffee.

Withdrawal is, of course, unpleasant and to be avoided when on a drug that causes it. For people on regular prescriptions causing withdrawal, they can fill a prescription early to ensure they do not run out. Not people on opioid prescriptions. You have to be constantly aware of your supply and when you can get a refill. However, nothing ever goes perfectly and something always happens eventually. For me, it was a pharmacy policy I was unaware of because I had recently switched from CVS to Walgreens after having enough of CVS. Walgreens is only marginally better.

A few weeks ago, I went through withdrawal for completely unnecessary reasons. Avoidable reasons. Walgreens deleted the last refill from a previous script when my doctor sent new ones in. I told him I had a refill left and to date it for May not April. I didn’t know that was apparently a big mistake.

Opioids have a different set of rules than other drugs. Limits on refills, and when you can refill them. It is a ridiculous rigamarole that does not save lives. I’ve lost people to the current crisis of illicit fentanyl in heroin. I know what it’s like. None of my family members died getting a hold of legally prescribed tramadol.

These are misguided, outdated, and ass-backward rules that punish those in pain and pretend to help those suffering with addiction. Security theater, that’s all it is.

So when I found out my prescription was deleted and I had no tramadol for April, it was after 4pm on Thursday. My pain clinic is only open Monday to Thursday. I couldn’t contact my doctor until Monday. I had extra pills because I saved some for flares or emergencies, and I assumed I would get my RX fixed on Monday. I didn’t realize my doctor would be out and I had to wait another day.

Inevitably, I ran out.

Withdrawal for me starts like restless leg syndrome, only all over the body. You can’t stop needing to move. It meant that night I only got snippets of sleep, the longest being an hour. It’s exhausting, painful, and disorienting.

The worst of my symptoms were Monday night to Tuesday. Thankfully, my doctor filled the prescription immediately and my mom got it right away. Still, almost 12 hours of withdrawal symptoms took its toll.

I felt like I had exercised too much from the constant tossing and turning. I couldn’t think straight for the whole day afterward. My brain was muddled. The absence of one simple pill caused so much havoc. And, of course, it also meant my regular pain levels were higher, it just wasn’t always so noticeable from the overwhelming withdrawal symptoms.

I’m a pain patient and because of how tramadol is classified, I’m not allowed to get my RX early. But if I had been able to, I could have caught the problem before my pain clinic closed for the weekend. I wasn’t allowed that chance. Instead, we are expected to run up to the end of a prescription before getting another. A problem just has to happen on the weekend to be devastating.

I live with the constant threat that my medication could be taken away and I have to go through withdrawal again. Worse would be the pain I could no longer quell and would restrict my life even more. Doctors will slowly taper you on any other prescription that causes withdrawal, but opioids are the exception because of addiction stigma.

I’m not the first or last patient to be forcibly withdrawn from my medication because of the stigma surrounding it. In all likelihood, something like this will happen again. I’m just fortunate to have my medication back. Too many pain patients are not, and it needs to stop. We must return to a humane way of treating pain.

Furthermore, we expect addicts to go through withdrawal almost as penance for their addiction. Drugs exist to make the symptoms easier, but they are not so easily accessible to those who need them. If the object is to save lives, then easing withdrawal symptoms should be a goal for addiction treatment.

No one should be forced to go through withdrawal or suffer needless pain. 

This shouldn’t be a radical concept.

Handicapped Halloween: How to Make the Holiday Fun for Everyone.

Posted on by
Reply

Halloween is hands down my favorite holiday, taking place in the best season of the year. Everything about autumn makes me smile, but nothing more so than Halloween. Candy, horror, and costumes. What more could you want? So, with Halloween just a week away, I wanted to address this holiday through a disability lens.

Last Year’s Jack O’Lantern – [ID: Carved pumpkin in shape of a ghost and a traditional Jack O’Lantern in the bacground]

I’m 37, so I have celebrated Halloween every which way. I’ve done my share of trick or treating, hit the parties in my 20s, and even visited Salem a few years ago. More recently, I have returned to the joy of trick or treating by giving out candy. I also walked the block with my young niece and nephew last year. They were dressed as a bee and beekeeper respectively, and myself as a plague doctor.

Halloween in general is a lot less stressful than Thanksgiving or Christmas, and costs way less. This aspect makes it easy for many people to participate, and yet, there are some blind spots. A holiday that is all about candy is going to alienate kids who have food allergies or severe illness that prevents candy completely. Many people can enjoy a party, but if there is a strobe light on for a spooky effect, then anyone with epilepsy won’t be able to come.

It’s really hard to address these issues if you’re not aware of them. It’s also one thing to have a strobe light at a party when you have confirmed no one has any issue with it. However, if you put a strobe on your porch where trick or treaters of all kinds will see it, you cannot guarantee someone with epilepsy won’t walk by and have a seizure.

The following is a list of things to consider for your fellow disabled trick or treaters and party goers, along with any helpful suggestions. Not everything on the list may apply to your celebrations, but I ask you to go through the list and consider incorporating what you can so everyone can enjoy this wonderful holiday.

1. We are still in a pandemic, so it is still a good idea to incorporate a mask into your costume. This especially goes for indoor parties where the virus spreads so easily. At the very least, please get the new bivalent vaccine booster to help protect not just yourself, but your family, friends and neighbors too.

2. If food is offered at a party, try to have a variety of safe food options for any food-sensitive guests. This is not just allergies, some people can have triggers outside common allergies. If possible, find out if there are any particular food requests. If you can’t meet specific food restrictions, do at least go for the most common allergies, such as dairy, eggs, and nuts. When it comes to allergen-friendly candy, try to include simple sugar-based sweets like Dots, Sour Patch Kids, Smarties, Skittles, Starburst, Swedish Fish, and Nerds. For kids who are severely restricted, consider participating in the Teal Pumpkin Project and hand out mini toys.

3. If you’re having themed alcoholic drinks, make sure there are alcohol-free versions. Many disabled people have conditions or medications that restrict alcohol consumption. It’s a good rule of thumb, so designated drivers don’t have to miss out on having fun drinks too. Also, make sure you always have plenty of water available.

4. Halloween lighting is always a must, but as mentioned above, please don’t use strobe lighting, it can induce seizures for some people. Flickering lights at a low frequency are safe, but anything with fast flashing and super bright light is a big no.

5. If you want to make a black cake in the spirit of Halloween, do not use activated charcoal. This ingredient is used when people have overdosed on pills to absorb the medication. That means if someone is on important medication, it will neutralize it. There are other black food color options, like squid ink. Grapefruit can also neutralize medicine, so avoid it in drinks too.

6. Make sure there is plenty of seating at your party or event and your physically disabled friends will be very appreciative.

7. Consider the volume of the music. First, you may have guests with hearing loss and sensory overload who find it extremely difficult to communicate with music that’s too loud. Second, it’s also nice for your neighbors who could also be disabled and want to enjoy Halloween in peace.

8. If you are renting a venue for the party, try to pick one that is handicapped accessible. Despite the ADA, there are still lots of buildings designed without disabled people in mind. Definitely consult your disabled guests on what they need. They may already know how well a venue accommodates their disability.

9. Unless you’re running a haunted house, I strongly suggest no jump scares. People with PTSD or other medical issues should be able to enjoy this holiday too, without having it ruined by an unnecessary panic attack. If you feature some kind of scare for trick or treaters, it should be opt in and not terrify people walking by on the street.

10. When I was a kid, there was a lot more climbing stairs and knocking on doors. These days, most people go outside to watch trick or treaters and if you have steps, I would suggest doing the same. I have a huge stairway leading to my front door and when kids come up, inevitably some can’t. So, if possible, make it easier for our really young or disabled trick or treaters and enjoy a night of costume watching. Also, only incorporate your dog if you can control them.

This is not an exhaustive list of all potential disability issues for Halloween, but it’s a good place to start. Most importantly, ask the disabled and chronically ill people in your life what you can do to make Halloween fun for everyone.

Is the Pandemic Really Over? Not for Many Disabled People.

Posted on by
Reply

Recently, President Joe Biden announced that COVID-19 is no longer a pandemic in a TV interview. It has sparked some commentary and repetitive news clips of his claim. I’m not a scientist, so I cannot say if the US is technically in a pandemic or not right now and I don’t plan to try.

Here is what I do know.

Photo by Daniel Schludi on Unsplash – [ID: Vials of Covid-19 vaccines.]

The pandemic is not over around the globe, and this means new variants will continue to remain a threat. We need to continue to vaccinate here at home and support programs that provide vaccines abroad. Just because the United States might be doing better, doesn’t mean we can just forget about our neighbors around the world.

The fall is always worse than the summer. Just like regular colds and the flu, COVID will surge again as the northern US stays inside from the cold. We can’t be complacent as school returns and our time indoors increases.

Lastly, disabled people continue to be forgotten in the larger COVID conversation. A few months ago, the CDC Director, Rochelle Walensky, blundered by saying that it’s encouraging that deaths from COVID now are mostly among people with multiple comorbidities, as if we don’t matter. Furthermore, the realities of the immunocompromised population are completely ignored. For many disabled people, COVID remains a very real and deadly threat.

There are two simple things you can do right now to make things safer for our disabled community:

1. Get vaccinated and boosted. This will reduce the ability of community spread and the emergence of variants.

2. Mask up inside public spaces, or outside when in a crowded place. Masks can help individuals wearing them from catching COVID, but the protection is vastly improved when everyone is wearing one, especially inside.

Testing is useful for catching cases of COVID, but negative tests are not a guarantee. I myself caught covid last New Years Day from my brother-in-law who tested negative before visiting. If you’re visiting someone who is immunocompromised, you still need a mask and vaccine to really protect them, not just a negative test.

You can choose not to do these things; it is your right. However, if you want the pandemic to truly be over for everyone, then this is what it takes. Because it’s also your right to choose not to be a dick.

The Changes to the CDC’s Guide for Prescribing Opioids Changes Nothing for Pain Patients.

Posted on by
Reply

I became a pain patient right around the time the CDC published its guidelines regarding opioids. I was initially given opioids for acute back pain and then suddenly no more. It was as if in the blink of an eye my doctors no longer cared that I was in pain. Many of the guidelines were codified into law by my state’s governor and no one wanted to help me anymore.

One practitioner told me to my face I just need to exercise more. Months of arguing with doctors until finally getting an MRI to diagnose my degenerative disc disease. Only then was I referred to a pain clinic and eventually I found someone who was willing to treat my pain. I was lucky. Many pain patients during these times were absolutely not.

Photo by James Yarema on Unsplash –
[ID: A pile of large white pills on a grey surface.]

Can you imagine being on a prescription that helps you for over a decade and having it forcibly tapered or cut off for no good reason? Now imagine it’s your pain medication, and that’s the difference between functioning as normally as possible and not at all. No changes to the current CDC Guidelines for Prescribing Opioids can ever bring back those who died of medical complications or suicide as a direct result of these draconian guidelines.

The Changes to the CDC Guidelines also cannot change the laws that states enacted to codify the recommendations into law. It does not change the DEA’s intentionally decreased opioid supply. It cannot reverse the opioidphobic attitudes many of the revised guidelines still uphold.

Yes, its true, they removed the limitation on prescriptions being higher than 90MME, but apparently “the devil is in the details“. The new wording may unintentionally lead to an interpretation that 50MME is now the preferred maximum dosage.

They also repeat the lie that there is no evidence for long term opioid use because of no long term clinical trials. While true, they omit that the reason is the ethical ramifications of giving someone in severe pain for a long period of time a placebo. Double blind trials are ideal but not the only possible way of obtaining medical data on the long term efficacy of opioids.

We cannot hang our hat on these revisions; the fight continues as ever. We need to come together to challenge opioidphobic laws and attitudes towards pain patients. Revisions will never be enough, and the CDC needs to do better.

(Please Note: This post was originally written in the spring but not published then due to medical reasons)

Spring Already?

Posted on by
Reply

I’ve been too silent lately. A new blog like mine should be doing everything to get out there, especially writing blog posts. When I think of what stops me from becoming that prolific writer I’ve always wanted to be, it often comes back to the fact I can’t get myself to just start. I’m also often overwhelmed by where to start. ADHD at its finest.

I have high hopes for this blog but they can only go as high as I am able to lift. I have every intention of addressing the latest 2016 CDC Opioid Guidelines update that has claimed to loosen the restrictions on opioid limits. Of course there’s more too it and a lot to be said on it’s impact. I will have a post on that as soon as possible.

In a couple of weeks I will have surgery, hopefully my post will be ready by then. It’s foot surgery, so I’ll be having a lot of time to sit, and think, and write. Let us hope. I think I also may start looking for a co-author to help keep the content coming.

Another hope I have for this site is a potential email and phone campaign to change laws now in place in many states as a result of the original CDC Guidelines. I’ve also considered including the media in this campaign. That will take a lot more work, but it is something I really hope to accomplish. My biggest frustration is how ignored this plight is. If we can do something to bring awareness and potentially even change laws, we must try.

Undoubtedly, I have a vision I wash to pull off that is constantly pushed aside by my own illnesses. Sometimes I can pull through and get it done and sometimes I can’t. Please bear with me as I find this blog’s footing and help with the content.

The Common Narrative for the Opioid Crisis Is a Complete Fiction.

Posted on by
Reply

One fact of life that I have learned as I get older is that problems rarely have simple causes and equally simple solutions. When a plane crashes, it’s never just one single cause but a multitude of issues culminating in a crash. The same is true for the opioid crisis. We have seen the same media report claiming that over-prescribing opioids have led to the rise in overdoses and we have tried to restrict our way out of it ever since. Prescriptions for opioids are at an all-time low while overdoses are at an all-time high. Meanwhile, pain patients continue to be forgotten collateral.

Image Source: Anesthesiology. The opioid paradox: Graph showing that prescriptions are declining while opioid overdose deaths are increasing over the past decade.

In early March 2016, I threw out my back and suddenly what had been reoccurring back pain turned into constant pain. To this day, I have not had complete relief from lower back pain; I can only reduce it with opioids, namely Tramadol these days. I have used opioids many times without any issues, but if I was a story on local news, my never-ending back pain would be the tragic start of my inevitable addiction. Instead, I lived the trauma of being denied necessary medication for no good reason.

When the incident first occurred, I was given Vicoden and it helped. I remember asking for a lower dose because if I take too much I get a nasty headache, which is the reason I don’t worry about addiction for myself. Then suddenly in the spring of 2016, Governor Baker signs a bill restricting opioid prescriptions based on the 2016 CDC Guidelines for Opioids and I cannot get another prescription to relieve my pain. I have extremely high pain levels for my back, and yet I had to suffer untreated. I ended up leaving my job for disability and I still cannot work. After months of fighting the issue with my doctors, I received the diagnosis of a herniated disk and sent to a pain clinic. I have been on opioids ever since.

The time spent not properly medicated was hard enough, but when I finally did have access to my medication I kept coming across unnecessary hurdles, and frankly bullshit from pharmacists, just to get my prescription. The worst was when the pandemic forced a change to only using electronic scripts. Due to the rules around opioids, doctors had to prescribe each month separately and not as a refill. CVS would dump the second script and when I called asking for my refill, they told me the script did not exist and it was a problem with my doctor. Luckily I have an understanding pain clinic, but I ended up transferring my pain medication to Walgreens because I had enough gaslighting from certain CVS employees. Still, every time I fill my prescription, I get anxious something will come up and I will be forced to endure days without my pain medication. That is a constant fear I live with every time my pills get low.

My story is not the only one of its kind, but it is consistently ignored. News reports covering the addiction crisis cherry-pick stories that match the narrative of an “innocent” person getting injured and then getting addicted to opioids after surgery. All thanks to doctors duped by Big Pharma. Addiction is certainly a tragic reality and one I would never downplay. However it’s important to understand that addiction cannot simply be blamed solely on the substance they abuse, other risk factors are at play. Many people use addictive substances without issue. Furthermore, it’s well understood that addiction often occurs from drug diversion, such as a family member stealing from a relative with a legitimate prescription.

The reality is that addiction has risk factors such as terrible socioeconomic circumstances, mental illness, trauma, and even genetics. Exposure to opioids alone does not cause addiction, and there are many aspects of addiction that are ignored in favor of the familiar narrative around opioid addiction. It’s easy to blame pharmaceutical companies and doctors for this crisis, but we didn’t get here on the addictive quality of these pills alone. People are suffering and dealing with an illness, and that requires a far more complicated approach that restrictions can never address. This is why people continue to die.

A new tv show aired on Hulu called Dopesick, and full disclaimer I have not watched it, but it’s peddling the same story that the opioid crisis is the fault of Big Pharma pushing addictive pills. While media can write all the stories they want to match this narrative, the truth is not so simple. We are told time and again that it was doctors who overprescribed pain pills and if we just stop overprescribing the problem will stop. After over 5 years of the 2016 CDC Guidelines restricting prescriptions, overdose deaths have continued to rise while legal opioid prescriptions are at an all-time low.

I am not addicted to opioids, but I do understand addiction. Many in my family have suffered from drug or alcohol addiction. Meanwhile, I struggled with nicotine addiction; first with smoking and then with vaping. I understand the stigma, and I know what it’s like to lose people to addiction. It took many tries to quit cigarettes and vaping until finally, I tried a more modern approach — I used Chantix and I’ve been nicotine-free since.

What does a modern approach to drug addiction look like? New York City opened the first of its kind Overdose Prevention Center aimed at giving opioid users a safe place to inject and avoid overdosing. These places also provide information and resources for people who want to quit. However, because many consider addiction a moral failing of being unable to quit, these safe injection sites are controversial. If the goal is to prevent overdose deaths, then reason and statistics dictate that this approach is necessary. Unfortunately, people are usually more concerned with controlling addicts and not putting in the effort to actually help.

As stated before, the issue is complicated, but I do know that our unwillingness as a society to deal with addiction on a humane level plays a huge part in why these deaths continue to rise. We will never find our way out of the crisis if we keep using one narrative as the logic behind every attempt to deal with the problem. Dopesick just repeats the same tired tropes that demonize a medication that legitimately helps millions of people.

Recently, two states have ruled in favor of the pharmaceutical companies, and we need consider why that is. If you have surgery and then your child steals your pills and gets addicted, how is that the fault of the company and doctor that gave you the medication in good faith?

We need to start looking at the opioid crisis as a multifaceted issue with many causes. Addiction can never be resolved through restriction and overdoses will continue to rise. Addicts will suffer and pain patients will suffer because people who don’t know what it’s like to have chronic pain or addiction feel self-righteous about refusing to legitimately help us. We need new ideas based on science to battle addiction, and we need to treat pain patients with what actually works. Morals have no business dictating solutions for either addicts or pain patients. Science must rule the day.

When it comes to addiction and chronic pain, don’t accept the simple answer. Strive to see the whole picture and base solutions on what actually works.