Medical Marijuana: The Next Wave of Pain Patient Abuse?

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So, yesterday, I’m scrolling through the email news alerts I save up through the course of the week as a matter of habit. And I see this one subject line that kinda pops out at me:

Marijuana Users More Likely to Abuse Opioids

Now, what the linked-to article actually indicates is that a recent study indicates there may be a correlation between medical marijuana use and patients who aren’t compliant with prescribed opioids.

As we all well know, there’s a huge difference between correlation and causation.

And maybe I’m just being paranoid here …

… gee, Annie, wonder why THAT would be … oh yeah. This. And this.

… but I gotta wonder: is this the new front on the war on pain patients? The war on us, Dolls?

I confess: I am not really a fan of pot. It’s purely a personal thing. I just don’t like feeling high. I’ve smoked pot – and unlike our former president, I did inhale – a total of three times in my forty-plus years, and I didn’t enjoy the experience any of those times.

But it’s just a fact that it does help folks with chronic and cancer pain.

And it’s legal in almost half the U.S. states. (Although if you’re using it, even legally, even in those states? You’re still a criminal in the eyes of the feds. How’s that for a sensible policy?)

So, you’ll forgive me if studies like this give me … pause.

I take pause when recent past history tells me, quite clearly, we Dolls using opioids are automatically suspected as addicts and criminals, until we prove we’re not. (Have you ever tried proving the absence of something? It ain’t easy. In fact, I learned in law school – aka “The Dark Hole” – it’s nigh unto impossible.)

I take pause when something that clearly helps so many pain patients is linked to criminal behavior – because I know so many people, including so many policy makers and law enforcement officials don’t even understand the difference between addiction and dependence, so how can I trust them to know the difference between correlation and causation?

I’ve been taking a lot of pauses lately.

I don’t know what the answer is. That’s kind of the scary thing, frankly. Other than a targeted, long-term, intensive public education campaign, what are our choices, really? How many times can we say the same damn things over and over?

When are they gonna listen?

photo credit: Dank Depot via photopin cc

Just Call Me “Subject A” – or Guinea Pig. Guinea Pig Works, Too.

Project Guinea Pig is a GO

I’m going to experiment on myself.

I’m going to try, sequentially, different treatment protocols of a conservative measure. (‘Cause I’m not gonna go around taking various prescription or illegal drugs. I’m not stupid.)

As for what kinds of conservative measures: I’m not taking anything off the table – unless it violates my common sense rule. That is, I don’t do anything that will impact my body, my mind, my kid, or my wallet if it is ridiculous on its face.

So, in this case, there will be no pseudo-science. No “cure” claims.

But short of that, I’m up for just about anything.

And the best part: after I’ve tried each measure for 30 days, I’ll write about my experience here on Euston Arch in a wrap-up post.

So everybody wins. Even if whatever it is I’m trying that month doesn’t do fuck-all for my pain levels, you’ll find that out, too. And maybe that will help you figure out what you should try – or avoid.

The Project Guinea Pig Rules

Now, I don’t have a crap-ton of funds available for this endeavor, mind you. So, this experiment may be somewhat limited by practical considerations.

But even so, I think there’s a lot out there that either (A) I haven’t tried before or (B) tried years ago when I wasn’t on medication and discarded because I didn’t see any significant improvement.

I’ve given this a lot of thought. I’m not looking for miracles here. I’m looking for stuff that works, though. So, I’ve settled on the following guidelines for this endeavor:

I must try each supplement, approach, treatment, etc. for at least 30 days. The only exception: if I turn out to be allergic to it. Obviously, I’m not gonna risk anaphylactic shock.
I will only try one new supplement, approach, etc., at a time. That way, we’ll be able to tell more accurately what’s behind any change in my pain levels or general health.
I do reserve the right to continue taking or following any supplement, approach, etc. that proved beneficial. So, for example, I might try supplement A in month 1. In month 2, assuming “A” works well, I might add supplement “B” while continuing to take “A.”
I’ll do at least one write-up for each thing tried – I may or may not add to that, if events warrant.
All posts will be gathered under the category of “The Guinea Pig Reports.”
I will give detailed descriptions of whatever’s at bat that month – how I take it, where I got it from, etc.
I will link to whatever source I used to acquire the thing (or learn the moves, in the case of physical therapies). But I will never use affiliate links for these posts. Click with assurance.

Wanna Be a Guinea Pig Too?

I am not advocating trying out new treatment protocols/measures willy-nilly here, mind you.

But if you’re already planning to try something out for yourself, and you’re willing to commit to it for at least a month, why not write up your experience for other Dolls? Drop me a line here and let’s chat about it.

Photo credit: Of Corgis & Cocktails via photopin cc

Ehlers-Danlos Dolls: NEW STUFF FOR YOU!

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Thanks to a super email from an Ehlers-Danlos Doll, we’ve got not one but TWO new additions on the ED resources page here at Euston Arch! Go check ’em out!

Chronic Pain and Social Security Disability Benefits (Guest Post)

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Note from Annie: Today’s post is a guest post from Molly Clarke, and I think it’ll offer some answers to questions a lot of Dolls have about Social Security Disability – enjoy!

Chronic Pain and Social Security Disability Benefits

When most people think of Social Security Disability (SSD) benefits, they imagine someone unable to work because of a serious physical disability – loss of motion, inability to walk, or life-threatening diseases. However, many individuals who need disability benefits have conditions that aren’t necessarily visible to outsiders.

A common reason why people apply for disability benefits is because they suffer from chronic pain. If you can no longer work due to chronic pain, you may be eligible for SSD benefits. The following article will give you a brief overview of the benefits available to you and will provide you with the information needed to begin the process.

Disability Benefit Programs

The two different disability benefit programs—SSDI and SSI—are governed by the Social Security Administration. Each of these programs is very different and has separate eligibility requirements.

SSDI—Social Security Disability Insurance—is funded by taxes that workers pay into the system. Therefore, eligibility for SSDI is determined by an applicant’s work history and the amount of Social Security taxes he or she has paid. Learn more about qualifying for SSDI here.

SSI, the second program that offers disability benefits, stands for Supplemental Security Income. SSI is offered to elderly and disabled individuals who earn very little income. SSI is a needs-based program and the SSA uses very strict financial regulations to determine an applicant’s eligibility. SSI has no work history or tax related requirements. For this reason, SSI is the best option for children or young adults who haven’t had the opportunity to pay into the system. Learn more about qualifying for SSI here.

Social Security Disability Blue Book Requirements

In addition to meeting the previously mentioned technical requirements, SSD applicants must also meet very specific medical criteria. These medical criteria can be found in the SSA’s blue book—the official guide of potentially disabling conditions. The blue book lists many different disabilities and impairments. Under each listing are the specific medical requirements that an applicant must meet in order to qualify.

Unfortunately, chronic pain is not listed in the blue book. To qualify for disability benefits with chronic pain you must have a documented, “medically determinable” condition. Essentially this means that you must qualify based on the condition or illness that causes your chronic pain, rather than the symptom itself. Because chronic pain can be caused by a number of conditions, it is suggested that you go through the blue book listings and search for the condition that best matches your symptoms. This may include the following listings: neurological disorders, somatoform disorders, inflammatory bowel disease, back injury, chronic renal disease or inflammatory arthritis.

You can find all blue book listings on the SSA’s website, here.

If your chronic pain is not caused by a listed impairment, you do have other options. If you can prove, using medical evidence that your symptoms make it impossible for you to maintain employment, you may be able to qualify under something called a Medical Vocational Allowance. To determine whether or not you qualify under a Medical Vocational Allowance the SSA will evaluate you to determine the location, frequency, intensity and duration of your pain, and how it affects your day-to-day life.

Social Security Compassionate Allowances

The processing time for an initial SSD application is often several months. The SSA realizes that individuals with severely disabling conditions may not be able to wait that long to receive benefits. For this reason, they allow people with inherently disabling conditions to qualify for benefits in as little as ten days. This is known as a compassionate allowance. View all conditions that qualify for compassionate allowance processing here.

Preparing for the Process

Prior to submitting your application for SSD benefits, it is important that you are thoroughly prepared. This includes collecting the necessary medical documentation to support your claim. Your application should include records of the following:

Your diagnosis
Hospitalizations and other medical appointments
Treatments and your response to them
Any lab tests or diagnostic images
Written statements from your doctors

Once you collect this information, it is also important to collect documentation of your finances and employment history. When you are ready to begin the process, you can complete your application online or in person at your local Social Security office.

It is important that you realize how difficult the application process may be. In fact, many initial applications are denied. If this happens to you, it is important that you don’t give up. You are allowed to appeal this decision. Once you are awarded benefits, you will be able to focus on your health and wellbeing rather than stressing about your finances.

About the Guest Author:
Molly Clarke is the Social Media Coordinator for Social Security Disability Help and contributes regularly to the Social Security Disability Help blog. You can reach her via email at mac@ssd-help.org.

Photo credit: Kid Vincent via photopin cc

How to Eat Right Today and Still Enjoy Your Holiday

Creating a Meditation Practice at Home for Chronic Pain Relief

Creating an Environment That Enriches Your Home Meditation Practice Your Surroundings

The best thing you can do to support a regular home meditation practice is to find – or create – the perfect space for it.

While you can meditate just about anywhere (even walking around your neighborhood), using a dedicated space will help you reinforce the habit of meditation – and the more consistently you meditate, the better your results will be in terms of pain management.

Here are some tips to get the different aspects of your meditation environment just right.

Props and Clothing

First and foremost, you should avoid any clothing that is uncomfortable in any way — tight, restrictive, itchy, not warm enough for the environment you’ll be sitting in, or too warm for the environment you’ll be sitting in.

Some suggestions on clothing:

Loose fitting tops without scratchy tags
Leggings
Yoga pants
Sweatpants

Generally, just keep it comfy, and with no distracting ornamentation or skin-irritating fabrics or threads.

As for props, you might find yourself in need of some assistance to maintain a good meditation position for any length of time and make it more comfortable for you. Bolsters and pillows can help you support aching body parts, while soft, natural-fiber blankets can help keep you warm.

Finally, think carefully about whether you want to add candles and incense. On the plus side, invoking/involving a variety of senses can help improve your meditation experience. But if you’re just going to sit there and be distracted by whether the candle might catch something on fire or whether incense ash is falling on your fine furniture, then skip them.

Distractions

If comfort is the number one rule of a home meditation practice, distractions are the number one no-no. So, when it’s time to meditate for the day, do yourself a favor and …

Turn off all phones and televisions.
Let your family/roommates know you’re not to be disturbed (if this isn’t possible, see the next suggestion for some timing suggestions to make sure you won’t be interrupted).
Put pets outside or in another room.
Be aware of outside sounds — if you know the road crew is going to start up at 8 AM on the dot, meditate at 7:30 instead. Sounds that we are accustomed to during our normal daily routines can become very distracting during meditation.

Using the Power of Habit to Reinforce Your Daily Meditation Schedule

“All our life, so far as it has definite form, is but a mass of habits.” William James wrote that in 1892 and it’s every bit as true today as it was in his time or hundreds or thousands of years before that.

Habit is a force that, once grooved into our neurological pathways, compels us forward in ways that can be either good, constructive, healthful, beneficial — or bad, destructive, dangerous.

Knowing that fact gives us a super power of sorts, though. By harnessing the power of habit, we can create some pretty incredible changes in our lives with relatively little fuss or drama.

This works well when you’re starting a healthy new habit, such as a regular meditation practice.

The key is consistency, and commitment for the short haul — roughly 21 days. That’s just three weeks you’ll have to power through your new routine – but after that point, your meditation practice becomes a habit.

For more on using habit to create positive change, check out The Power of Habit by Charles Duhigg.

Scheduling and Frequency

For best results, aim to meditate every day, even from the beginning. It’s better to meditate for ten minutes daily than for an hour every few days, when you’re trying to establish a regular practice for chronic pain treatment purposes.

Morning sessions, in my experience, are more beneficial than sessions later in the day. But if the only time you can establish a regular meditation habit is after dinner, or before bedtime, or during your lunch break, then by all means do that.

Aim to meditate at roughly the same time and in the same place every day. This will help you develop the meditation “habit” more easily.

Length of Session

In the beginning, if you don’t have any significant experience with regular meditation, aim for short sessions of ten to fifteen minutes.

Then, as you become more adept at the practice, try to extend your sessions in short increments — say, from fifteen minutes to eighteen minutes.

Finally, don’t commit yourself to long, thirty-minutes-plus sessions in the beginning. Meditation is a skill and like any skill, it takes some practice to become adept at it. It also requires some physical adjustment, as our bodies aren’t used to sitting still and awake for long periods of time.

So go easy on yourself, and set yourself up for success, rather than failure.

Some More Helpful Links on Establishing a Regular Meditation Practice & Mindfulness Meditation in General

In the interest of keeping it non-threatening and non-overwhelming for beginners, I’ve pared down the list of resources offered here to just a handful of recommendations in each category.

Bear in mind, this is but a tiny fraction of what’s available out there — much of it excellent, some of it questionable, and a small percentage possibly even harmful. The resources here are ones I’m personally familiar with, and will definitely get you started. As with any component of your chronic pain treatment plan, exercise your own good judgment, and talk with your doctor about any specific concerns.

From there, follow your interests and ask others (or me) for recommendations!

Websites and Links on Meditation

There are a vast number of resources available on the web that can help you learn how to meditate and expand your meditation practice. Here are just a few that I particularly like or thought might be helpful:

Meditation Apps for Inner Peace On the Go – Huffington Post
Yoga Journal’s Meditation Practice Guide – YogaJournal.com
A Meditation Guide for the Rest of Us – Lifehacker
ZenCast – ZenCast.org (many resources, including a meditation timer tool)

Books on Mindfulness Meditation

You may find these books useful:

Mindfulness Meditation for Chronic Pain Relief: Guided Practices for Reclaiming Your Body and Your Life – Jon Kabat-Zinn
Mindfulness in Plain English – Bhante Gunaratana
The Mindfulness Solution to Pain: Step-by-Step Techniques for Chronic Pain Management – Jackie Gardner-Nix
The Miracle of Mindfulness: An Introduction to the Practice of Meditation – Thich Nhat Hanh

Videos & CDs on Mindfulness Meditation

Jon Kabat-Zinn, a leading mindfulness meditation researcher, has produced a few recorded guided meditation series (series 1 here, and series 3 here) that are available on Amazon. Guided meditation recordings can be very useful for beginners who aren’t really sure whether they’re “doing it right” and just as helpful for experienced meditators who want to explore new forms of meditation.

Finally, you might enjoy this short presentation on mindfulness meditation presented by Kabat-Zinn for Google employees.

Photo Credit : Loving Earth via photopin cc

Something’s Gotta Give

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Back at the beginning of this year, I came clean with this site’s readers.

I confessed that I felt bored writing about pain.

That I was feeling a good bit of resistance to the label of “chronically pained” – a label I’ve been living with for over 10 years now.

That the combination of these rather complex emotions was behind my absence from this site for several months.

I wrote another post after that one about the external life stressors that also kept me away from the blog.

And then I didn’t write another post for this site until this past Sunday – six months later.

Something about the road to hell and paving stones made out of good intentions…?

Anyhoo. That’s a post for another time.

What I didn’t ‘fess up to back in January – and couldn’t have, anyway, because frankly it didn’t even really register with me consciously until a few weeks ago – was a deeper, darker thought that was probably behind all that boredom and resistance.

It’s such a dark thought that even now, after becoming aware of it, I don’t really want to write it.

But like a reluctant witness in a mafia trial, I swore to tell the truth in my writings here, so – with a not-insignificant dose of trepidation – I’ll come clean(er) now:

I feel like a fraud.

There. I said it.

Scones, anyone?

What?

Oh, ALL RIGHT.

I feel like a fraud because this site’s tagline promises that you can thrive – not just survive – with chronic pain.

Yet for the last several years, all I’ve been doing is surviving. And not just surviving – barely surviving.

To be fair, for the first few years after the Cat-5 shitstorm made landfall in my life, all I could do was concentrate on survival issues – reflected in the plaintive, slightly panicked tone in this post, for instance.

But for the last two years, survival has been slightly more assured. We have our own digs for the first time in a long time, and even without the Section 8 benefits that should have started for us back in February (thanks EVER so much, Republicans), I’ve been able to make enough money on my own to cover the rent and associated bills.

It occurs to me now that what I was feeling back then about the time of the “The Truth Hurts” post, and for the intervening years between then and now, was a heightened form of acceptance.

In truth, it was more like resignation.

I was resigned to surviving, and resigned to not thriving.

Which made this whole site – or at least, my continued publication of its articles – a fraud, in my view.

My days are like carbon copies of each other. I wear yoga pants – I sleep in yoga pants – and shuffle around in pink fuzzy slippers with grosgrain ribbons and sparkly crystals that my daughter gave me last Christmas. My ass is planted so firmly on the couch that it’s permanently taken said ass’s shape. I work. I write. I make dinner. I spend a half-hour talking with my daughter. I go to bed. In between, I take medication to stave off the worst of the pain. I hurt in between doses, but for the most part, it’s manageable.

It’s … acceptable.

It’s tolerable.

And I think it’s killing me.

So, now that I know that’s what’s been going on for the last few years – that somehow I’ve become resigned to merely coping with my pain – I have a few options. As far as I can tell, actually, I have three:

Change this site’s tagline to “coping with chronic pain.” This option leaves me cold and thoroughly uninspired.
Change the way this site gets updated. Stop writing for this site completely. Let other people take it over (people who haven’t lost hope) or just let the thing die altogether.
Change my life.

Something’s got to change, one way or another. And I don’t know what, and I don’t know how. I have loosely formed clouds of ideas – malleable cotton puffs that twist and shift just as soon as I start to examine them closely. I have very few answers. I do have questions – but not all the questions.

But I do know that when I contemplate living the rest of my life in this sad state of resigned nothingness, I feel incredibly sad.

And that feels unnatural to me.

So: Something’s gotta give.

Photo Credit : Chris Devers via photopin cc

Grieving the Body We Lost to Chronic Pain

I used to dance.

From 4 years old right through college, my weeks were marked by a steady progression of dance classes. Ballet, tap, jazz – for a few years, baton twirling and competitions on the weekend.

I mark the years by the name of the teacher I was currently studying under. The Barbara years, the Jodi years, the Heather years.

During an adolescence marked by struggles with my weight and a steady onslaught of bullying and teasing, with all the self-loathing that combination always yields, my dance skills were a much-needed source of body pride for me.

I could do splits easily. Put my palms flat on the ground by my feet with straight legs. Pull my foot back up over my head and touch my nose with my toes.

And then chronic pain invaded the territory, planted flags, subdued the natives, and changed everything.

It didn’t really occur to me until a few years ago – over seven years into my new reality – that I’d lost something there.

I mean, sure, intellectually I grasped the concept that my days of pulling my foot over my head were probably over.

But the idea of having lost the body I used to have and enjoy eluded me. It just didn’t register, not until quite recently.

We all lost something when chronic pain became our new reality – something quite real: the body we used to know.

These new bodies we have aren’t at all similar. They refuse to cooperate. You want to go left, but the body has its own ideas. You want to get up and be active – it says “hell, no, this ass ain’t leaving the couch.” You want to stand straight and still at your best friend’s wedding – the body’s all “nah, I think I’m gonna feel dizzy now and lose my balance so you make a fool of yourself and upstage the bride.” You want to play ball with your kid – two pitches and the body goes “We’re done here.”

And then there’s the pain. Not just the pain you know – the all-too-familiar aches and cramps and buzzes and stabs. Also the new pains – the breakthrough pains, the unfamiliar sensations that happen suddenly after a movement you’ve done a million times before without a problem, the involuntary spasms in places that never felt pain before.

We’ve lost that body. And even though we can improve, get stronger, and even heal – we can’t get that body back. It’s gone – it’s forever been changed.

It’s a real loss, and it needs to be grieved.

When my mother died, I felt immediate grief. I did a lot of crying those first few days, and I felt the full force of the loss at her funeral.

But then a week or so later, something odd happened. It was like a switch got flipped. I felt nothing. Pure numbness, emotionally speaking.

Granted, I had a lot of shit going on about that same time.

Something about that whole series of events seemed to shut me down emotionally, and put a halt to the grieving process as matters of survival took precedence.

But a funny thing happened. After I went through that Category 5 shitstorm, and after I’d managed to get my feet back underneath myself, boom: the grief was right there again. Insistent. Pervasive. It even invaded my dreams. I’d dream about Mom all the time, and every single time, though the dreams themselves varied, there’d be a point in each where I’d remember that she had died. And then the next moment, which was even worse, I’d wonder, “Which was the dream? Her death or her being alive?”

My point – and I do have one – is that grief will not be denied. One way or another, we’re going through whichever of those five stages we need to hack our way through.

Once we get through those stages, we can finally be free of that baggage, at least, and get serious about rebuilding our lives, and taking care of the bodies we have now.

Photo Credit : Mena Rota via photopin cc

On Moving, Keeping Moving, and Asking For Help

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So, as I revealed in the last post, I was forced to move last year.

I’m sure we can all agree on this point: Moving? Sucks. Regardless of the excitement of new digs, fresh start, all that jazz – it just sucks.

But when you’re living with chronic pain, moving is its own special brand of hell. Things that the normals take for granted – like, say, packing, cleaning, walking – we basically roll the dice on. Will we be able to move that box from the truck to the house? It’s a crap shoot.

Fortunately, I had a fair bit of advance warning. True, the former landlady started out giving me two weeks notice, but ultimately, she was very fair and I ended up having two months, give or take a few days, in which to get ready for the impending trauma.

Sounds perfectly reasonable, doesn’t it?

Two months. I mean – eight whole weeks! That’s plenty of time for us to get our crap together, weed out the stuff we didn’t want to move, arrange for a new place, line up help …

Yeah.

Here’s what actually happened.

Figuring It All Out

The biggest obstacle was the first one I had to face: figuring out everything I had to do in order to accomplish the big-picture goal of relocating.

Now, see, normals just go find a place, get some boxes, start packing, call some friends, order up pizza and beer, and they’re done.

But CP Dolls have additional hurdles they have to clear. Reduced physical capacity means reduced capacity to earn, which means reduced income – in my case, severely reduced income. So, job one was finding enough money to actually accomplish the move.

First month’s rent, deposits for the house and for the utilities, the actual costs of moving – I don’t have a car (I had to sell it a year ago to make rent), so I was going to have to rent a truck – all these expenses totaled up were well beyond my means.

I was incredibly fortunate, and my friends and loved ones were incredibly generous. My brother contributed the truck rental costs. Through a few friends who worked in the social aid community in my area, I found out about a new grant-funded program at our local Section 8 agency that was designed to help folks like me with relocation costs. That program ended up helping me with the deposit and first half-month’s rent on the house.

With a little careful juggling, friends who chipped in generously, and a last-minute website job that came in, I had just enough cash to cover the utilities deposits and hiring some folks to help with the physical labor.

Barely, mind you. But I had what I needed.

So then it was on to the next dragon I had to slay …

Finding Someone Who Was Willing to Rent to Me

Spoiler Alert: This one’s got a surprise ending. Well, it was a surprise to me, anyway.

Refer back to that whole “reduced earning capacity”/“reduced income” thing.

Another unpleasant side effect of living with chronic pain is the poverty that comes with it. And the poverty itself also increases the cost of living. In other words, it costs the poor more to live in many instances.

This particular project, then, would reflect one of those increased costs.

Normals can go out, look at apartments or houses, fill out an application, and generally go on with their lives while making their decision – get that, their decision – of which of the handful of suitable options they want to live in, because of course their applications will be approved.

Why wouldn’t they be? They’ve got healthy-ish bodies and the jobs and (relatively) solid credit scores that go with them.

But when you’ve been struggling with CP for years, and the last several of those years were of the self-employed, cobbling-a-living-together-from-all-your-random-skills variety, then you’ve got a whole different cobble-stoned, obstacle-laden road ahead of you. It looks more like this:

Call a bunch of places that advertise available space.
Find out which will accept Section 8 (which you anticipate getting in two to four months, since you’ve been on the waiting list for two years).
Plot out with military precision the bus routes you’ll need to take to go view the three or four units still on your list.
Cry, because you realize even with the bus routes you’ll end up walking three miles and you just cannot do it.
Cry more when the first landlord calls back and says that you took too long trying to arrange transportation and the unit is no longer available.
Talk to a friend – or more accurately, listen while friend talks you down off the ledge. Dig deep. Somehow, find your resolve again.
Start all over.
Find one possible apartment or house, then call the cab and go see it immediately (paying $12 for the one-way trip) and on the way, mentally pep-talk yourself up into your best, most positive, friendly, reliable persona so you can convince the landlord to rent to you despite the fact you’re self-employed and lost an apartment in eviction proceedings four years ago when the world fell in on you.
Which, by the way, is freakin’ exhausting, so after it’s over, collapse.

Rinse and repeat as needed.

But here’s where the universe surprised me big time: That first cab ride?

Ended in a signed lease.

For a beautiful 900 square foot 2-bedroom 1945-built cottage with hardwood floors.

And despite the lack of heat and the piss-poor water flow, I LOVE THIS PLACE SO MUCH.

(Although I do have to get wi-fi installed. This every-day-trek-to-the-coffee-shop is good for my body but bad for the wallet.)

So, the lesson I took from all that goes something like this: “Plan for the worst, but be open to the possibility that God might throw you a curve ball and really delight you with an unforeseen assist.”

Which left only the biggest, baddest dragon of all …

Actually Moving

“How many times have I moved in my life?”

The question occurs to me as I sit here struggling to come up with the words to describe what happened not even two months ago.

The answer, as near as my fibro-fogged brain can tell, is “24.”

Twenty-four moves.

Is that a lot? ‘Cause it seems like a lot.

I’m including in that tally a move from Chapel Hill back to my hometown when I was six years old, though I left out the move from hometown to Chapel Hill three years prior (because, hello, I was a toddler) and I probably shouldn’t even count this one at all since my contributions consisted exclusively of holding a doll and sitting well out of the way.

And it also includes all the times I moved into and out of a dorm in college – that’s eight moves right there.

That still leaves 13 moves. Yeah, that’s still a lot, isn’t it?

So, let’s go back to the “24.”

For the first 18 of them, I had help.

But the last six?

Out of mom’s mobile home and into the 100 square foot studio apartment
Out of that apartment and into a friend’s basement
Out of that basement and into a friend’s spare room two states away
Out of that room and up to another basement, in another (now ex-)friend’s house, in the city where I currently live
Out of that God-awful basement and into two rented rooms in someone’s home
Out of those rooms and into the rented basement (that’s three basements in three years, for those of you playing our home game)

Without help. All of ‘em. Each and every move was accomplished by yours truly.

And that leads us to this last move – out of that last rented basement and into this lovely cottage.

But here’s the difference between those six and this most recent move, and it’s a pretty damned big one: This time, in addition to clothing and books and toiletries and stuffed animals – little stuff even I can lift – this time, I was moving furniture and a whole kitchen-ful of … er, kitchen crap.

We’d lost all our furniture years before, in two separate waves. The first wave hit after the eviction, when I had to give away or abandon a lot of furniture I just couldn’t fit into that shoebox studio, and the second one crashed months later, when I couldn’t afford to keep up with the storage unit rent for the stuff I hadn’t been able to bear parting with.

But over the course of the last two years in that rented basement apartment, I’d accumulated a somewhat sparse collection: two couches, a loveseat, a table, three chairs, two beds … that’s it, and it all came from donations from other people and giveaways. It was all hard-used and definitely looked like what it was: second-hand crap. But it was my second-hand crap, damn it.

And now it was mine to move.

I called the few male friends I had made who were local, but they all were booked up solid for the Thanksgiving holiday, and couldn’t lend a hand.

Next, I called the contacts I’d made in the local social aid community – they said they’d get back to me but, since it was a holiday, they were all overworked taking care of the homeless population in town.

I even asked the cabdriver who drove me to look at the cottage that first day. He was 72 but, bless him, he said he’d be happy to help – but I’d have to find someone else to help him, and I’d have to do the move on the Tuesday before turkey day, which was two days before I could get in to the new digs.

Then, I got creative. I called the local homeless shelter on Thanksgiving Day and spoke to a very nice worker there named Matt.

And that’s how I ended up the morning after Thanksgiving, driving a seventeen-foot Ryder panel truck carefully through my city’s sketchier downtown area, a block from the homeless shelter, looking for a group of homeless men who would be standing near a dumpster, Matt had said.

They saw me before I saw them, and they all ran towards the truck, shouting enthusiastically, some in broken English, and smiling at me.

This was a new experience. I wasn’t sure how I was supposed to proceed. Interview them? Ask for references? Draw straws? Fight club? A motherfucking walk-off?

I rolled down the window and held up two fingers.

“I just need two guys,” I said.

The first two guys that reached the truck hopped in and introduced themselves as Jorge and Luis.

Jorge spoke very good English – Luis understood me, but had trouble forming sentences of his own, so we slipped into an easy relay pattern where they’d converse in Spanish, then Jorge would relay a question to me, I’d answer, and Jorge would translate for Luis.

They had experience in moving; I could tell by the way they took a quick visual inventory and then started loading the heavy stuff – my second-hand mattresses (I know, ick) and the couches – into the truck first, and the efficient way they carried all the smaller stuff out and arranged it carefully.

And they were careful with my second-hand crap. Like they were all priceless antiques.

It took them three hours to empty the basement and unload it all into the cottage. It cost me $30 for each of those hours, plus an additional $10 tip to each of them at the end.

Parting with that $110 was the best fucking feeling I’d had in months.

The Aftermath

The day still took a crapload out of me, despite Jorge and Luis doing all the heavy lifting.

There were floors to be swept, trash to be picked up, bagged, and emptied, and last-minute packing of all the stuff we’d forgotten. In the new place, there were beds to be made, clothes to be unpacked, food to be arranged …

By the end of the day, I was hurting like I hadn’t hurt in a long, long time. Every muscle screamed, and my left leg was so nearly numb and useless that all I could manage were short, cane-assisted hobbles to the fridge and the bed.

And I continued to pay those dues the next day, too. All that Saturday, the pain throbbed in my neck and shoulders, and spread down to my calves and ankles. My back was one twisted, spasming knot of angry muscles.

But then something odd happened. The next day – Sunday – I felt better.

That’s two days after the massive, unusually strenuous exertion.

See, before the move, I expected to be bed-ridden for four days or more.

But there I was, Sunday morning. I was still hobbling and gingerly favoring a very sore back and leg, but I was up. And cooking breakfast. And unpacking.

I was functional.

Two. Days. Later.

I’m not sure mere words can describe how overwhelming that sudden infusion of hope felt to me.

For the first time in – well, years, I guess – I felt something other than resigned acceptance or bull-headed “I’m gonna have a good life despite the chronic pain” optimism in regards to my chronic pain experience.

It was the first time I felt it might be possible for me to heal.

Happy New Year! Can It Be…? Is It Possible…?

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YES.

Euston Arch is back in business. (So to speak. Y’all know this site has always been a labor of love for me, my big dreams for it notwithstanding.)

What Happened Back There?!

As you may have guessed, given the wide gap in dates between this post and the previous one, I … er …. took a little break.

OK, a half-year-plus break.

The reason why is a convoluted one, but it basically boils down to this: I was consumed by one thought —

I have no idea anymore how to write about pain in a way that won’t bore me silly.

God’s honest truth, y’all. That’s what I kept thinking, over and over:

I am boring myself to tears.

And I convinced myself this was the problem. (Spoiler alert! It wasn’t the problem at all. Read on.)

Let’s face it: talking/writing about pain is just flippin’ hard. I think this is true for many reasons.

First and foremost, there’s the fact that chronic bodily pain is, at some level, totally subjective. Each of us experiences our chronic pain in different ways. There’s no way for us to know with any certainty that we’re talking about the “same thing” when we talk about our pain.

And those numerical scales we’re supposed to use to describe our pain to medical professionals? In my opinion, they’re just marginally better than useless. Your “five out of ten” might be my “eight out of ten” and someone else’s “three.”

There’s also the fact that we’re just hard-wired not to want to talk about it at any length. Our own pain, or anyone else’s. We get burned out on feeling it, and on talking about feeling it. And on listening to someone else talk about it.

Or – in this case – writing and reading about it.

For the last six-plus months, I just could not dredge up one single angle for any pain-related topic that didn’t strike me as trite, tired, already-done-to-death, or just plain boring as hell.

So, I followed my mom’s advice: I had nothing useful and/or helpful to say, so I kept my trap shut.

Or the blog unpublished, as you will.

But Wait! There’s MORE …

That existential writer’s crisis is not the sole reason I didn’t write for such a long time.

Other crap happened. Big crap. In point of fact, a huge, steaming, stinking pile of crap.

Namely, I had to move.

In late September, my then-landlord – a sweet and kind young woman with a habit of making every sentence sound like a question, whom I’d come to consider on par with a younger sister – dropped this bombshell on me:

Sooooo … I’m going to have to ask you to move? Because I’m going to sell the house? The downstairs needs to be redone, y’know? So, fifteen days?

Yeah, that actually happened.

It ended up being two months, not fifteen days (crikey, y’all! I mean, can you imagine? Could YOU move in two weeks?!), during which I was all panic and anger and fear.

Digression: Oddly, this turned out to be one of the best things that could possibly have happened. It ended up with my daughter and I safely ensconced into a home of our own – a charming little post-World-War-2 cottage that we share with nobody, which is the first time that’s been true since ’09.

NOTE: I’m going to be writing in more detail about this move in the next post, because this whole experience has, in a way, reshaped my relationship to my body and my chronic pain.

So, all that happened. And I let it keep me away from writing a new post or working on the site at all.

The Twist At the End of the Story

Now, all this seems rational, right? If not entirely reasonable. At least, you can see how this belief that I couldn’t write because I was suddenly, mysteriously struck with the Boring Writing virus coupled with the physical trauma and extreme stress of moving conspired together to keep me off the blog for several months.

Here’s the catch though: all that was basically bullshit, I’ve decided.

It finally occurred to me that I was deluding myself into thinking that my opinion mattered at all. Because, at the end of the day, this isn’t for me. It’s for you, the readers. The only opinion that matters here is yours. If you’re getting something valuable from my boring writing about chronic pain, whether it’s a helpful tip, the knowledge that you’re not alone, or just a good hearty laugh from time to time, then we’re all good and I should keep my big fat ego the hell out of it.

And then, too, there’s this: a lot of what I perceived as “boredom” was just dressed-up resistance.

I didn’t want to be that person ~~coping~~ thriving with chronic pain.

I didn’t want to feel that pain, to be sure. But that’s true of most of us (except the masochistic among us).

But this was more than that. It was more a feeling of not wanting to carry that label – of dealing with its consequences – of being That Person, the one with chronic pain.

I was tired of carrying it around and having it define me.

So, making up this “it’s booooooring” excuse was just that – an excuse, to get me out of the responsibility of writing about it.

Now, here’s the part where I tell you all about how I came to grips with my chronic pain – AGAIN – and learned to treasure its gifts, how it’s the Best Thing Ever to happen to me, how I’ve learned sooooo much from its many blessings, yadda yadda, etc.

Pardon me, but – PUKE.

Also: I could make some shit up here along those lines, truthfully (and it would probably pass muster with at least half of you – I’m a gifted liar, at least in writing).

But it would just be nonsense. And false.

And more than anything, I believe, this kind of writing – the kind of writing I want to do, and excel at – requires honesty. Even when it’s the pain-in-the-ass variety.

So here’s the unvarnished truth:

I still fucking hate my chronic pain.

I’d give just about anything to have my old body back.

Blessings? BAH. You can have ‘em, as long as I get my high-kicking, fully functional legs back.

That’s not to say I always feel this way. Sometimes, I do feel some personal growth that’s taken place over the last 13 years because of this mad dance with pain. Every now and again, I might even feel grateful for the experience, in light of what it’s taught me about myself.

But most days?

Nah, I’d kick chronic pain’s ass to the curb so hard – harder than a perpetually drunk boyfriend who called me by his ex’s name in bed.

So there you have it. My continued inability to accept the fact of my chronically pained existence kept me off this blog for months.

What can I say? I’m working on it.

And that may be the answer, I’ve decided.

I’ll work on it … in these posts.

‘Cause the way I figure it, if it’s happening to me, chances are pretty good at least a few of you out there feel the same way.

So, let’s work on it together.