Category: chronic pain

Seeking Chronic Pain Treatment

Posted on by Grayson

Chronic pain affects millions of people worldwide and can have a significant impact on daily life. Unfortunately, many people who suffer from chronic pain struggle to communicate their experience to their healthcare providers. It’s hard to explain this stuff to people who have no clue! That can lead to suboptimal treatment and frustration.

This won’t be as much fun as my sarcastic post on this topic a few years ago. My hope is that this one will actually be helpful.

In this article, I will provide guidance on how to talk to your doctor about chronic pain. From preparing for your doctor’s visit to developing a pain management plan, I will cover key topics to ensure that you and your healthcare provider can work together to manage your chronic pain effectively.

Understanding Chronic Pain

Chronic pain is defined as pain that lasts for more than six months, even after an injury or illness has healed. Unlike acute pain, which serves as a warning signal to the body, chronic pain is a complex condition that can be difficult to diagnose and treat.

It can be caused by a variety of factors, from injuries to acute illnesses to long-term conditions. Other factors, such as stress and trauma, can also contribute to chronic pain. Note that doesn’t mean that pain is all in your head – it means that there are links between these things and pain that are proven.

There are different categories of pain, too. This can be based on where the pain is located, what type of pain it is, and how the pain came to be. Some types of pain include migraines, fibromyalgia, neuropathic pain, musculoskeletal pain, and nociceptive pain.

Preparing for Your Doctor’s Visit

It can be helpful to keep a pain journal to document the severity, location, and duration of your pain. This information can assist your doctor in determining the cause of your pain and developing a treatment plan. Some of us (waves) dislike doing that as it keeps our focus more on the pain than not, but there are still ways to track pain without being so in-depth. For example, I tend to post on social media about rough pain days. Then, the night before an appointment with a provider, I’ll go back over my social posts in the last few weeks to get a better picture of how my pain has been. It’s a much better set up for me. Your mileage may vary.

Make sure that you provide your doctor with a comprehensive medical history. You’ll want to keep them up to date on any changes, including surgeries, injuries, or illnesses. This can help them better understand your pain and tailor a treatment plan to your specific needs.

Finally, make sure to make a list of any questions or concerns you have about your pain. This can help you address all of your concerns during your visit.

Communicating About Your Chronic Pain

Be specific in describing the type of pain you are experiencing. This information can help your doctor determine the cause of your pain and develop an effective treatment plan. Some words that your doctor will understand include throbbing, radiating, intermittent, constant, and burning.

Use a pain scale to describe the intensity of your pain. That seemingly medieval one isn’t helpful for me, and it’s okay if it isn’t for you, either. Instead, I like to use the comparative pain scale. It’s much easier to use to communicate limitations and discuss how your pain affects your daily life. That includes activities that you are no longer able to do or how being in pain impacts your mental health. All of this information can help your doctor develop a treatment plan that addresses the impact of your pain on your quality of life.

I’ve pulled together a slightly better version of the pain scale, questions your provider may ask, questions you may want to ask, and ways to track your pain to can help you discuss with your providers here:

"discussing chronic pain with your providers" with a photo of two people speaking with a provider

If you’d like to edit this on your own Canva account, click here and make a copy. If you’d like the PDF version, click here.

Discussing Treatment Options

Your doctor may recommend medications like nonsteroidal anti-inflammatory drugs (NSAIDs) to help manage your chronic pain. They might even recommend opiates or similar medications. This is less likely due to ongoing policy issues, at least in the United States.

Medications can be effective in reducing pain, but they can also come with side effects that may impact your daily life. Be sure to ask about potential side effects before starting or changing medications. It’s important to have an open and honest conversation with your doctor about what types of medications and therapies you’ve tried in the past, and what has or hasn’t worked for you. It’s also a good idea to keep track of any side effects you experience so you can discuss them with your doctor at your next appointment.

In addition to medications, there are several alternative or complementary therapies that can help with chronic pain.

Complementary medicine refers to practices that are used alongside traditional medicine to help manage pain and other symptoms. These may include herbal remedies, supplements, or mind-body practices like tai chi. Before trying any complementary medicine practices, be sure to talk to your doctor to ensure they are safe and won’t interact with any other medications you’re taking.

Alternative therapies, such as acupuncture, massage, and hypnosis, may be effective in managing chronic pain. Some alternative therapies may interact with medications or be contraindicated for certain medical conditions. So, again, talk to your doctor first.

Physical therapy can be an effective treatment option for some types of chronic pain. Moving can be helpful to reduce pain levels for some people. As someone with Ehlers Danlos Syndrome (EDS), I work with a physical therapist to strengthen and readjust how to move my body. It’s made all the difference. Your doctor may refer you to a physical therapist to develop a personalized treatment plan.

In some cases, surgery may be helpful or necessary to alleviate chronic pain. Your doctor can discuss surgical options with you and help determine whether it is an appropriate treatment option for your specific condition.

Developing a Chronic Pain Management Plan

When it comes to managing chronic pain, it’s important to have a personalized plan in place. Work with your doctor to craft a pain management plan that takes into account your unique needs and circumstances. This may include a combination of medications, therapies, and lifestyle changes.

When developing your plan, it’s important to set realistic goals. It may not be possible to completely eliminate your pain. That said, you can work towards reducing your symptoms and improving your overall quality of life.

Having a support network can also be an important part of your pain management plan. This may include friends and family members who can provide emotional support, or healthcare professionals who can offer guidance and expertise. This also includes taking care of your emotional and mental health.

Chronic pain takes a toll on everything, but especially emotional and mental health. It’s important to address these needs as well as your physical symptoms. The mind-body connection plays a crucial role in managing chronic pain. Stress, anxiety, and depression can all exacerbate pain symptoms. That’s especially true for conditions like fibromyalgia, EDS, and many types of arthritis.

Developing strategies for managing these emotions is key for overall health. Some people enjoy meditation or deep breathing exercises. Others find more relief through working with a therapist. If you’ve had traumatic experiences, working with a therapist to unpack that trauma can help with pain levels, too. It’s amazing how much our bodies really do keep the score.

Support groups can also be helpful. These can provide a safe space to talk about your experiences with others who understand what you’re going through. I personally am not the biggest fan, as these can often devolve into “I have it worse” conversations. That said, the groups run by the US Pain Foundation are the absolute best I’ve found. They even have specialized groups for the LGBTQ+ community, the BIPOC community, teens, and more. The LGBTQ+ group is run by my friend Sara Gehrig who is amazingly compassionate and creates a space safe for all members of the community. No transphobia here!

Follow-Up and Continued Care

Managing chronic pain is an ongoing process that requires continued care and attention by you and your provider.

Keep track of your symptoms and progress. Share this information with your doctor at each appointment. This can help you and your doctor make informed decisions about your treatment plan, including any updates or adjustments that may need to be made.

If you’re not getting relief from your pain, it’s okay to seek additional help. Same if you’re experiencing new or worsening symptoms that your provider is struggling to work with. Your doctor can refer you to pain specialists or other healthcare professionals who may be able to offer additional treatments or support.

Now, if you feel like your healthcare provider is not taking your chronic pain seriously? It may be helpful to seek a second opinion. Additionally, you can advocate for yourself by being clear and specific about your pain experience, bringing a pain journal to your appointments, and asking questions about treatment options. It’s also okay to bring a buddy with you to help you advocate, especially if you’re bringing someone who holds identities of power that you don’t. For instance, a Black person may want to bring a white person with them if they’re concerned that their provider isn’t listening to them because of race or ethnicity. A woman may want to bring a man if they’re concerned about sexism.

Remember, you have the right to adequate pain management. Even more than that, you deserve to work with healthcare providers who take your pain seriously.

Takeaway

Talking to your doctor about chronic pain can be challenging, but it is essential for finding the best treatment options. By communicating your pain experience, discussing treatment options, and developing a pain management plan, you can work with your healthcare provider to manage your chronic pain effectively. Remember to follow up with your doctor, track your progress, and adjust your treatment plan as needed. With the right approach, you can improve your quality of life and manage your chronic pain.

9 Helpful Gifts for Your Disabled Loved One

Posted on by Grayson

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

The Shipwreck and The Crumbling Temple

Posted on by Grayson

My body is an old ship, weathering a continuous storm. Smaller storms should feel like pebbles. Nevertheless, they pound me into rocks.

I come away with bruises from a poke,
a needle,
a bra.

Each time I feel the storm let up, to give me a break and collect my bearings, I’m made a hopeful liar.

It’s raining outside,
again.

The storms hit me like hurricanes.

I feel beaten,
sore,
exhausted.

This body feels like a ship in the middle of wrecking, throwing people overboard as I toss and turn and writhe in pain.

I do not truly ‘sleep’ anymore, not as others do. I nap for an hour here, two hours there, until pain throws me back into the waking world unprepared for the horrors I wake up to.

In the daylight, I can at least see my terrain. I know where the rocks lie, and I can avoid them. The fog, once thick enough to cloud my lungs, returns as the sun sets over the horizon. My breathing, once calm and mindful, becomes a new beast. My deepest breaths begin to resemble that of a parent birthing an heir.

I’ll have no heir. No person should need to inherent my existence, to see my soul tormented so.

As the darkness grows deeper, I can no longer avoid the rocks. The sea, gently gliding me in the daytime, becomes a monster throwing me to and fro. I no longer know which side is starboard.

I cannot sleep in my quarters, next to my lover. As the cursed vampire Dracula stole Lucy away, I too am forced to a different space. These storms, not unlike Dracula himself, chase me through the night.

Sometimes, I awaken to notice my legs running from this thief,
this vampire,
this storm.

Despite it all, my hopeful heart believes that I will make it to the morning,
the next day,
the weekend.

I try to combat the storms. I tie down all that is holy to me, anchoring them upon my bow. Leading my way through the darkness with this love guiding me seems safe. Well, safer than leading with my actual eyes. Looks, as I have learned, are deceiving in the storms.

And yet, despite my efforts, all signs point to an ending to come. There will be a time, and I’m afraid it is in the not-too-distant future when that promise of daylight does nothing. Like a thief in the night, the reaper will come for my soul. There will be no fond farewells, no happy send-offs or kisses on the forehead – just me.

We will never learn the answer to the riddles within my depths. No keys in existence can unlock the chests full of medical treasure within my hull.

Those who say our bodies are temples to be worshiped and adored have not visited this ship. They do not writhe with me in the night or awaken to new bruises and symptoms of the wreck to come. No, like Molly Brown herself, they believe they are unsinkable.

My body is no temple – or, if it is, it’s one that sits, long forgotten, until pain comes to steal its few treasures. I stand proud, alone in the wild until the booby traps snap into action.

As the thief, the raider of my tomb runs for her safety, I begin to crumble,
piece
by
piece.

In my place, I leave damage and destruction. It, too, will be forgotten. No tourists will visit my wreck and exclaim,
“O, woe is me!
I have not seen this broken land in its prime!
How did I never know such things of beauty and pain can coexist, side by side?”

No one will come to gaze upon my wreckage and wonder what else could have been done. Underwater machines will not visit my bones on the ocean floor, filming their journeys for posterities’ sake. No one will wonder what gold or charming grace is left in my depths.

No growth will come from my loss. People will not recognize the harm they’ve done by refusing my entry to calm and steady piers. They will say, “That ship was always heading for a wreck. It lasted quite a while longer than I thought it would.” Instead of mourning, people will remember only my storms that affected them.

After over a year of constant storms, amidst those caused by an ever-changing climate, the daylight stays a little longer. The fog begins to ease up and, for the first time in months, I can breathe.

For the first time in a long time, moorings appear. Instead of having to beg to be seen, someone tosses me a line.

My ship will, I know, wreck itself upon the rocks someday… but that someday is not today.

New Potential Diagnoses, New Medications, and More Tests

Posted on by Grayson

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

photo of the benepod, the usb cable, and the adapter against a rainbow heart covered pouch against a wooden table; teal overlay with white text: " benepod review - not standing still's disease "

Benepod Review

Posted on by Grayson

The makers of the Benepod sent mine to me for free in exchange for my feedback and honest review.

Spring is always a rough time for me. The constant barrage of storms brings intense joint pain, especially around my knees. Thankfully, this year, I have the Benepod.

the benepod box with instructions, usb cord, and adapter

You may remember Lady Gaga sharing how she alternates hot and cold quickly for her chronic pain. That’s what this product does, albeit on a smaller scale.

underside of benepod showing a light ring of red around the outside and large circle of blue on the inside

The underside of the device has a red ring that heads up as well as a blue circle that cools down when plugged in. This leads to Thermal Grill Stimulus – something that can’t fully be explained yet. While we don’t know why it works, it can help mask or ease someone’s pain.

One of the coolest parts of using the Benepod is that there is no medication to take or topicals to apply. We really don’t have to worry about side effects like with other pain treatments. I don’t have to resort to extra NSAIDs that upset my IBS or the few muscle relaxers I have that make me woozy.

To use it, you plug the device in. A green blinking light will go solid once the device is ready to use. It’s good for twenty minutes which doesn’t sound like a long time but somehow is. If you want more time, you simply unplug the device, plug it back in, and wait for your solid green light.

It is a little small, so moving it can get a little cumbersome for my crippy arthritis hands. Thankfully, Saringer is already working on things like a strap to hold the device in place to make it even more accessible.

This doesn’t completely get rid of my pain. To be honest, I don’t think there’s any one thing out there that would. What Benepod does, though, is take my pain from a seven or eight out of ten to somewhere between three and five. As much as I loathe those medieval pain scales, they’re at least good to show progress in pain reduction.

With how many storms we’re having lately, I’ve been heavily relying on the Benepod to help me get through the nights. There aren’t many things I feel the need to always have close by, but this is one of them for sure.

Do I have to be near an outlet?

No! The fact this uses a USB cord makes it super easy to use a portable charger to power the pod. The cord is so long, too, that I’m easily able to use it in bed while plugged into a USB hub.

Is this affordable?

Look, I’ve reviewed some things that cost several hundred dollars. I’m happy to say this only costs $99! You can snag it on Amazon, too, which means you could use gift cards and get it quickly.

Is it worth it?

Completely. There are nights that I struggle to sleep because my knee pain is so bad. When I make time to use the Benepod before bed, I actually get a few hours of restful sleep.

The A-Z of Illness

Posted on by Grayson
There are many things we learn over the course of an illness that would’ve been better known towards the start. Funny enough, though, a lot of these things can fit in the alphabet. What better way to share things we wish we knew at the onset of illness?
 
A: Am I sick?
Sometimes it’s easy to doubt how ill we are. We gaslight ourselves because others doubt our illnesses. We might have a few good days and think we’re better. But, yes, we are sick even when we’re doing well. Even if I can’t see it or my friends and family can’t see it, I am still sick. Just because I look good or show up not naked to things doesn’t mean it doesn’t hurt.

 

B: Bills, Bills, Bills
Get ready to watch any savings you have leak slowly out of your account to cover medical bills, prescription co-pays, and more. Plus, good luck working to try to pay those off when your body won’t give you a break and you can’t hold down a real job!

 

C: Curse Words
They help relieve pain. No, really. Use the power of the curses and swears!

 

D: Disclosure
Every single time we meet someone new, whether romantically or platonically, we have to share about our illnesses all over again. It sucks – not just because of how difficult it is to be that emotionally vulnerable but also because we get to watch these potential relationships fade away as the impacts of our illnesses become more readily apparent.

 

E: Exhaustion
The level of tiredness you’ll face will be way past just tired and, at times, even past fatigue.

 

F: Food
Our relationship with food gets so complicated. You might be hungry all the time for a week and then lose your appetite for six months.

 

Guessing game: 
One of the most frustrating things about being sick is not being able to tell what you’ll be able to do at any given time. Having to RSVP essentially means playing a guessing game based on the season, other things you need to do around that time, and random crap.

 

Hot flashes: 
Chances are, you’ll deal with this (and/or cold flashes) as a part of your health issues. Keep a bottle of lotion in the fridge for those hot flashes. It’s a lifesaver!

 

I: Intolerances and allergies
Many people with health issues have or develop intolerances and allergies to various foods or other things. Conditions like these are called comorbidities and are super common.

 

J: Juggling
One of the most difficult things about illness is handling a million and one things at once. Schedules take a huge hit, necessitating a lot of juggling. A pile of doctor appointments on top of picking up medications and other supplies, getting lab work, etc. – it’s a lot, especially if you’re working.

 

K: KT Tape, Braces, and Wraps
One of the most important things to learn is how to ease pain and support your joints. Ace bandages don’t do the trick when they keep unraveling! Meister kickboxing/MMA wraps work a lot better. KT Tape can be super helpful, especially for supporting knees.

 

L: Lab Work
Depending on your health issues and medications, you may need lab work anywhere from once a week to a few times a year.

 

M: MRIs 
Chances are you’ll wind up in an MRI machine at some point. It’s very loud. On top of the noise, it’s not easy to lay a certain way – very still – for sometimes hours on end. Get your meditation or nap on.

 

N: No
Having to say no to a lot of things you’d rather do is commonplace. Eventually, you’ll have to start choosing what is more important to you, prioritizing time with friends and family in new ways.

 

O: Oh my god, why?
Everyone goes through periods where they get upset. We wonder why we’re ill when others aren’t. It’s okay to feel that way.

 

P: Pills
Get used to sounding like a maraca when you walk! And taking pill after pill. And figuring out what to drink with all those pills.

 

Q: Quitting
It’s okay to quit. It’s okay to feel lost. Quitting on things one day doesn’t mean the fight ends – it just means you need a break. And that’s okay.

 

R: Relationships
The toll that health issues take on relationships is often underestimated, whether that’s

 

S: Sex Life
As I talk about over on Chronic Sex, illnesses have wide-ranging effects and can especially affect our sex lives.

 

T: Thinking is hard
Brain fog is an asshole. It can and will rob you of your ability to think and communicate clearly with others. It’s a part of why I do almost all of my communicating via writing – it’s the best way for me to be able to fight the fog.

 

U: Unpredictable
Chances are, your health will be incredibly unpredictable. Swelling, pain, and other illness factors do not work on a schedule.

 

V: Vomit
Yup. You’re gonna vomit – maybe a little or maybe a lot.

 

W: Well-meaning friends
People make well-meaning comments that erase the feels we have. The thing is that we know you mean well, which is why we don’t get hella angry, but erasing our feels or experiences is super harmful.

 

X: Xerox (as in making copies)
You’re gonna be making and copying and printing out a million and one things related to your condition(s)… including the incredibly long medical records we’re likely to have.

 

Y: Youth
Guess what? People get chronically ill and disabled in their youth. These things can strike at any age. Get over it.

 

Z: Zebra
The zebra is an adorable and majestic animal. It’s also silly and cute. More importantly for illness stuff, though, the zebra is a rare disease mascot.

 

What would you add to the list?

When in Oregon

Posted on by Grayson

I grew up in Oregon but have not visited since 2010. T and I went out there for two weeks after I graduated college as his gift to me. It was a really nice visit, even though we had to see family that I didn’t much care to see.

I’m sure Uncle Jim doesn’t realize how harmful his words were that Thanksgiving he brought food over for my grandma but not for my sister and me. We missed turkey day at his place because I was throwing up. I wanted to stay home and sis wanted to stay home to take care of me. Grandma freaked out and, in a huff, decided we wouldn’t go at all.

There are so many reasons I don’t talk to most of my family.

Anyway, I really haven’t had a reason to be back, seeing as I couldn’t make my ten-year reunion earlier this year. I have had a few friends I wanted to visit, but not enough to spend money on a ticket just for that when I’m not working.

You can read more about why I was there over on Chronic Sex. I’m sensitive to the fact that not everyone is interested in my adventures as a budding sex educator and icon (not my words).

One thing that has come about in Oregon is the legalization of marijuana for recreational use.

One thing I had never tried, despite growing up in Oregon? Pot.

I visited a dispensary whose website was really focused on helping those of us dealing with pain in addition to the average consumer. When I told the gal I had no idea what I was doing there – and explained – she really took to educating me a lot about pot and the various products there are for pain relief.

I picked up a salve – which I threw out because it smelled a lot danker than the test model in the store – and some edibles. Edibles are when pot has been put into another item like candy or brownies.

When I was sure that I was done traveling around for the night, I ordered some pizza and popped an edible.

The only effect I really noticed was feeling loose and maybe a little giggly. Mostly, though, I was tired and probably should have tried this not at my internal clock’s midnight.

Enjoying the soft sheets was definitely a highlight, too. I live-tweeted a bit of this first try which was fun.

I did have a nightmare that felt very real. However, the way I handled it was much differently than I have sober. I woke up, texted T (who I knew was likely still asleep), and then snuggled back down and went back to sleep.

I didn’t stay up crying or freaking out at all.

The next night, I set up a lot earlier for my foray into pot. I made some food, worked on packing a little bit, and continued my habit of watching Adult Swim.

Last night, I slept like a goddamned baby. I got the longest uninterrupted sleep I have had in a very long time. I was comfortable, cozy, and enjoying texting my loved ones positive and affirming things.

I felt very grounded, very sure of myself, and very present. I also felt like I was owning some of the positive things my friends have said about me and the work I do. I really began to feel like I was important and that it was okay to accept these compliments.

That’s not something that I’ve really been able to do before this trip.

My body slowly became comfortably numb. The few pains I had dissipated. My body felt loose in a positive way.

I really didn’t feel any mind-altering stuff at all.

This is because of the kind of edible I got. It had 5 parts CBD to 3 parts THC. For those of you unfamiliar with pot-lingo, THC is what gets you high. CBD, though, doesn’t; it decreases anxiety and short-term memory issues – along with having amazing pain-relief benefits. It’s known to have anti-inflammatory properties, too.

I consumed something much more medicinal than recreational, though it was available without a medical card – which still is a thing you need for some of the stronger stuff.

So, what’s my verdict?

It’s hard to give a full verdict when I have been having less pain lately, etc. I recognize that I cannot necessarily say exactly how much pain was relieved through my using pot two nights in a row.

I did get a little sick to my stomach, having to visit the bathroom a bit more often. The second night, I really got hit hard with that pot taste in my edible and nearly threw up because of it.

I had fewer side effects with pot than I have had with opiates. I was less high with pot than with opiates.

If people want to look at cracking down on opiates for chronic pain, they need to begin offering us an alternative. Frankly, pot seems like it could be one for some of us. Maybe someday, when Scott Walker is no longer in power in Wisconsin, they will join the states around them and – and the very least – allow us to have medical marijuana. If they do, I will probably be one of the first people to sign up.

Until then, I know that I will have ways to manage my pain when traveling to states like Oregon, Washington, and Colorado for conferences and more.

Is pot legal where you are, at least medically? Have you used it for pain relief? What did YOU think?

Study Alert: Chronic Pain and Relationships

Posted on by Grayson
You have the opportunity to help researchers at the University of New Brunswick conducting a study understand how chronic pain conditions interfere with relationships!
This study is designed to help understand how pain/health issues affect people’s views of themselves as eligible, valuable romantic partners, as some of UNB’s ongoing research suggests people beliefs about their worth as a potential partner is used as a reason to defer dating/staying single despite a desire for a partner. They think it’s possible CP contributes to feelings of shame, perceptions of low self-esteem and relationship competency, and low satisfaction in relationships via pain’s contributions to physical limitations and mental health symptoms (i.e., depression, anxiety).
If you are Canadian and at least 18 years old, or American and at least 21 years old, you are eligible to participate. Since the questionnaires can be done online, the study is open to all consenting adults.
In the questionnaires, you will be asked for a little bit of information about you (e.g., age, gender), any persistent health conditions you may experience, your relationships, and your feelings about yourself. It will take 30- 45 minutes to complete the questionnaires. Participation is voluntary and all information you choose to share will be kept confidential. All participants will be entered into a drawing to receive a $10 honorarium (i.e., a gift card) for their time.
If you are interested in learning more about the study please go to the study website at https://survey.psyc.unb.ca/HealthAndRelationships.aspx or contact Lyndsay Crump (doctoral student in clinical psychology), Rehabilitation Psychology Research Laboratory (University of New Brunswick) at rehablabUNB@gmail.com.
Please note that getting more information about this study does not obligate you to participate. This project has received ethics approval from the University of New Brunswick (REB 2015-120).

 

You Can Help Stop the Reduction of Opiates in 2017

Posted on by Grayson
In case you haven’t heard, the latest tactic to fight the opioid overdose epidemic – and, concurrently, screw us chronic pain patients over – is here! For next year, 2017, the DEA is going to reduce the supply of Schedule II drugs.
Way to go, buttheads.
Chronic pain patients aren’t taking this sitting down, though.
My pal Anita is a badass. Clearly, she and I are trouble together.
Because of her chronic pain illnesses, she has started a petition on Change.org to ask the DEA to reconsider the reduction of the opioid supply. She’s been through a lot but asks that I not necessarily go into details about her life because “I want this to be ours all of ours.”
She goes on to say:

I have been a little aware of this restriction of Opioids for some time. I was sorta scared but also ignored it as I am in the process of applying for disability and that is stressful in itself. It wasn’t until my pain doctor, who I thought I had a great rapport with, said some ableist things and tried to stop my opioid meds all together… As upset as I was, it sorta woke me back up that relying on the system without keeping it in check, the system will always choose their own best interest. Though it was reading the article in the petition [and linked above here] that really just fired me so up that I had to do something. Being that I was an activist by way of physical protest and was used to doing things my body can no longer do, this was the only thing I could think of to do. I hope to at least create some awareness on the issue, get some people fired up and hopefully help people understand we aren’t addicts we just want to be able to live.

So, what can you do?
Sign Anita’s petition. Share it. Put it on Facebook and Twitter and Tumblr and other social media. Email it to your friends and family members.
Help us stop the ridiculous treatment of chronic pain patients here in America.

 

Ten things I LOVE about me! #pam16

Posted on by Grayson
Self-love isn’t always an easy thing. Even more, it isn’t easy to share that stuff with others. With Pain Awareness Month going on, it’s even more important to share these things in order to help each other deal with our illnesses – in order to help us all improve how we look at loving ourselves.
So here, in no particular order, are the ten things I love about myself:
  1. My willingness to embrace new ideas.
  2. My compassionate heart.
  3. My fighting spirit.
  4. My love for animals.
  5. My sense of humor.
  6. My blunt, truth-telling nature.
  7. My cooking skills.
  8. My eyes.
  9. My vulnerability.
  10. My love of learning.
What are some things you love about yourself?