January 2020 - Edith Lalonde

Reverse Stereotypes and Cautious Optimism

16 Comments / Living With Chronic Pain / Edith / January 25, 2020

Hey Everybody,

I had my first appointment with the rheumatologist this week.

Thanks to the excellent comments on the vampire blog, I went to my appointment looking like I just rolled out of bed, when in fact, I had just rolled out of bed.

Can you believe recent studies continue to show women (especially attractive women, or in my case, women who at least make an effort to look good) are still at higher risk for having their pain issues discounted?

What the actual fuck?

It’s 2020, isn’t it?

*Looks around for someone to concur and finds herself home alone.

No matter.

I’m opening up a can of chronic pain whoop-ass, and I’m doing what I gotta do to get the medical attention I need. *Cue waking up (in pain) the morning of my appointment.

I hobbled to the bathroom, pulled my curly (read frizzy) hair back and secured it with a clip, washed my face, picked the gunk out of the corners of my eyes, and brushed my teeth.

That’s it: no hair products, no makeup, not even a hint of mascara.

To complete my worn out chronic pain look – I wore faded yoga pants, my Johnny Cash t-shirt, and an OPC sweatshirt that used to be slightly too big, but as of now, is slightly too small. Ugh! Hate it when my clothes shrink in the dryer.

*Gives side-eye to the people snickering in the back…

Moving on!

By this point, I don’t like what I see in the mirror. I look tired (because I am), I look bloated (could be, who knows, I’m not the best judge), I look unhappy (I’m not, but I am sad at the news of the unexpected passing of a dear friend), and I look like I made zero effort to face the day (I did make zero effort, so, goal achieved).

But do I look like I’ve been battling chronic pain for the last twenty-four + years?

In MY head, I do.

I rarely do this – leave the house looking like my hair went ten rounds with a Brillo Pad and lost the fight. It’s not vanity, at least, not entirely. When I’m in pain, I make an effort to dress better, put on makeup, and do my hair.

The higher my pain levels, the more I focus on my physical appearance when I’m out in public, mostly because it’s one of the few things I have control over when it comes to my body. There are other reasons as well; we’ll get to those in another blog.

This blog. THIS blog – is all about THE Doctor.

Let me start by saying, THE Doctor is not a vampire. He is, however, young and good-looking. My initial reaction when he breezed into the exam room before I completed the paperwork on my medical history was – oh, great.

I’m fucked.

Here’s this young, hip, sweater-wearing, Twitter doctor who’s probably in a hurry to get back to his Starbuck’s Triple, Venti, Soy, No Foam Latte.

That assumption was my mistake.

My BIG mistake.

And a perfect example of why stereotyping individuals is not to our advantage.

Doctor Sadly Not a Vampire sat down after an efficient introduction and proceeded to take an extensive medical history. Without any prompting from me, he hit all the symptoms I wanted to raise, and some I hadn’t thought of on my own (hair loss, in particular, was a surprise and is also the subject of another blog). He further revealed through our discussions that he had reviewed my previous x-rays and medical information sent to him in preparation for our appointment.

At this point, I’m cautiously optimistic. Also, I’m schooching my butt around the chair like I’ve got a case of restless hiney syndrome because my buttocks are starting to hurt from the hard pleather.

He then did a quick, albeit full physical exam of my joints and Fibromyalgia tender points. This involved a lot of poking, pulling, manipulating of body parts into painful positions that are probably not painful for most people, and measuring range of motion in back, chest, and hips.

Then we sat back down, and here’s what he said:

He agrees with the Fibromyalgia diagnosis. I didn’t think it mattered to me if he did or not, but I feel weirdly vindicated. Probably, because I mostly self-diagnosed my Fibro way back in the late ’90s.

He also suspects something is going on in addition to Fibromyalgia. He mentioned Ankylosing Spondylitis along with some other types of arthritis, again, with no prompting from me.

Seriously…NO PROMPTING FROM ME!

I know, right!

I could hardly believe it either.

Next he wrote orders for the following blood tests:

HLA-B27 – a positive result means HLA-B27 is in your blood, and you may have a higher-than-average risk of certain autoimmune diseases, such as Ankylosing Spondylitis. However, a negative finding also does not mean you don’t have an autoimmune disease.

ESR – Erythrocyte Sedimentation Rate is a test that indirectly measures the degree of inflammation in the body. I’m pretty sure I’ve had this blood test before, and the results were negative.

CRP – A C-reactive Protein test measures the amount of C-reactive protein in your blood, giving a general idea of the inflammation level in your body. High levels of CRP can be caused by infections and many long-term diseases. I believe I also had this test previously.

He also ordered x-rays of my lower lumbar and sacroiliac (hip) joints.

Then he prescribed Naproxen/Esomeprazole – Naproxen is a non-steroidal anti-inflammatory drug (NSAID) used to treat joint pain, among other pain issues such as tendinitis, bursitis, and gout. Esomeprazole is a proton pump inhibitor (PPI) that blocks acid production in the stomach, a potential complication/side effect of the Naproxen.

If you’ve ever seen me try to swallow a pill, you’ll understand why I’m thrilled that these two medicines are combined into one capsule. Yay! I only have to take two pills a day, and if I don’t register any improvement in back pain, I’m to advise my doctor and request another NSAID.

Next, we talked about the things I should be doing on my own, like getting better sleep. HA! Yes. He saw my eye roll and admitted better sleep was going to be difficult to achieve with Fibromyalgia, but he insisted I try anyway. We talked about exercise and what the right kind was for me – swimming, walking, yoga, Tai Chi. Basically, anything with no to low impact.

Finally, we talked next steps, and he advised he wanted to see me back in four months for a follow-up. He even made sure the appointment was booked before I left the hospital.

Uhh, wait? What? You mean – I get to come back? You mean – I’m not dismissed, good luck, don’t let the door hit you in the sore patootie on your way out?

Did you see my hair?

I look like a shorter version of Kramer.

Well, alrighty then…so, there you have it.

I am cautiously optimistic that maybe – MAYBE – Doctor Sadly Not a Vampire is the wellness partner I need to get my chronic pain under control.

Highly cautiously optimistic! (Rose-colored glasses, remember?)

And so my journey continues one day, one week, one month at a time. Glad you’re still here and hope some of what I learn along the way can help you in some small measure, too.

In the meantime, let’s keep the discussions going! Leave a comment and tell us about some of your positive and negative experiences with stereotypes. Or don’t. That’s cool too. Feel free to do with these blogs as you will, but just a reminder either way, if you hit the subscribe button you’re entered to win one of the Caring is Sharing Prize packages. Nothing else required.

Until the next blog – peace out pain sufferers.

Current pain level 6/10.

** Never one to avoid a camera, this blog is dedicated to Christine Newman. Guaranteed, her infectious smile will continue to brighten the memories of those who loved her.

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Vampires and Old Ladies and Rheumatologists, OH MY!

12 Comments / Living With Chronic Pain / Edith / January 19, 2020

I LOVE vampires. Yep. All caps LOVE vampires. The broody, not the brutal, kind. The kind who pretend to be badass, but are really good-to-the-indestructible-bone beneath those hard-packed muscles and chiseled good looks.

In fact, I love all badass mystical creatures – werewolves, shifters, witches, warlocks, demons. Male. Female. Other. Doesn’t matter. They’re all tragically romantic to me.

I LOVE their hunters, too. Witchers, Winchesters, Demon Slayers, *special shout out to Buffy the (ultimate) Vampire Slayer. Yeah, I love them all. Hardcore. Who doesn’t relish watching an epic good versus evil battle?

Although…Dean Winchester comin’ in hot for Damon Salvatore? No. No. NO! Don’t make me choose!

So? What the DEVIL does this have to do with chronic pain?

Glad you asked.

I was in my early twenties when a colleague joked I must be a vampire because I wore sunglasses on cloudy days. I remember the conversation because – HELLO – vampire wannabe! Sadly, I had to explain I was a mere mortal with sensitive to light eyeballs. Too much exposure to bright(ish) light and my eyes would spring a leak.

Nothing to worry about, right?

Yeah. Sure. Right.

The general aches and pains I was feeling in my neck? Those I attributed to partying too hard. You probably can’t picture this, but I was a heavy metal headbanger back in the day. Guns and Roses, Skid Row, Def Leopard, Metallica, Ozzy Osborne. The louder and harder-rocking the club – the happier I was to be there.

Ahh, to be twenty again. Young, oblivious, and immortal – that was me.

Then I jumped off a cliff.

Literally.

Trust me, landing the wrong way on water from a fairly substantial height is the equivalent of leaping from a third-floor balcony and slamming butt first onto a concrete sidewalk.

It fucking hurts.

Don’t even get me started on the accidental enema.

Long story short, I end up in my doctor’s office with a sore tailbone. She told me to park my butt on a donut for a couple of days. Well, guess what, the pain NEVER went away, and frankly, shit went downhill from there.

Fast-forward ten years, two babies, and a Fibromyalgia diagnosis later, my ass still hurt. And now, my husband was comparing me to an 85-year-old lady when I got out of bed in the morning.

Yes, indeed, he likes to live life on the edge.

Thing is…he wasn’t wrong. I was stiff, sore, hunched over. My back wouldn’t straighten. My ankles refused to bend. I hobbled to the bathroom, stumbled to the kitchen. I kept going…because I had to. Eventually, my joints would loosen, and the pain would become tolerable. Repeat the scenario the next morning. And the next. And the next. My own personal Ground Hog Day. Yippee!

Around this time, I stopped sleeping through the night. If the pain in my neck, shoulders, and back didn’t wake me, the severe night sweats sure did. Waking up at two am tangled in wet linen is disgusting – seriously – disgusting. When I raised the issue with my doctor, she said I was too young for menopause. No other causes were investigated.

By the time I hit my forties, body parts had started to malfunction.

Huh? What?

Let me explain. I experienced multiple bouts of gout, plantar fasciitis, Achilles heel, and irritable bowel. I developed painfully dry/scaly patches of skin on my thighs and shoulder blades. I advised my doctor, bought prescription creams, tried to eat better, got orthotics, lost weight.

My pain issues persisted.

When I was unable to take my t-shirt off because I couldn’t rotate my shoulders or lift my arms over my head, my doctor suspected bursitis. I was sent for physiotherapy. Eventually, my mobility returned, but the pain remained.

When my hip joint seized mid-holiday cruise, I limped around for days. After my vacation, I was sent for x-rays. Nothing unusual showed up. My hips continued to be problematic, the pain ongoing.

When my back rejected the idea of supporting me in an upright position, I spent an excruciating eight days lying flat in bed. After multiple trips to the emergency room and my doctor’s office, I was prescribed Hydromorphone (painkiller) and Cyclobenzaprine (muscle relaxant). No cause was determined.

By mid-forty, I had gradually lost enough hearing in both ears to have significant difficulty understanding people. I broke down. I got hearing aids. I hate wearing them – if you need to get my attention, please feel free to shout at me – in the kindest way possible.

In January 2019, at the age of forty-nine, I was home alone when severe chest pain dropped me like a sack of hammers. That was crazy scary. In between attacks, I crawled to the bedroom. Got my phone. Called an ambulance. I spent a week in the hospital. Had an angiogram. My heart was good. I saw my doctor, she sent me for an MRI, ultrasound, and blood work. No cause was determined.

By the fall of 2019, I couldn’t take it anymore. I was in pain, head to toe. I couldn’t sit, I couldn’t stand, and resting made things worse. I went back to my doctor. She decided it was time for some bone scans. *Cue internal cheering because finally – FINALLY – I would get some answers. Right?

RIGHT?

Imagine my disappointment when my doctor said my bone scans were mostly normal. Mostly. Images showed bone spurs in my lower back. “Probably the early stages of Osteoarthritis,” she said.

WTF? Early stages? I’ve been in pain for years!

My bone scans did, however, indicate inflammation and bone spurs on and around my right orbital bone. This is not normal, and I was sent for additional x-rays of my head.

In the meantime, I went home and Googled arthritis. This led me to the Canadian Arthritis Society, and the Ankylosing Spondylitis (AS) symptoms page. From there, I jumped to the Spondylitis Association of America page. Eventually, I found the AnkylosingSpondylitis.net website.

I discovered the following:

AS symptoms usually appear before the age of forty-five and can affect the spine, neck, ribs, chest, shoulders, hips, thighs, hands, feet, eyes, and ears.

Signs and symptoms include:

General discomfort
Widespread pain or pain in multiple areas at once
Pain in the lower back, hips, and buttocks
Stiffness in the lower back, hips, and buttocks, especially in the morning or after periods of rest
Neck pain, especially in women

Ligament and tendon pain
Extreme fatigue
Night sweats
Psoriasis or itchy and patchy skin
Sensitivity to bright light and/or watery eyes
Chest wall pain that can mimic a heart attack
Insertional Achilles tendonitis or Achilles heel pain

Plantar fasciitis
Bone spurs or formation of new bone, especially in the lower back
Bowel inflammation
Eye inflammation
Heart inflammation
Hearing Loss
And get this… *people with AS are at higher risk of developing Fibromyalgia

Uhh…I’m no doctor, but it seems to me my medical history indicates I have, at one point or another, suffered from nearly every single Ankylosing Spondylitis symptom. Mentally, things click into place. My random symptoms of widespread pain don’t seem so random anymore.

Soon after, my final X-ray results come in. My doctor’s office calls to confirm there is no reason for concern. *In other words, I don’t have cancer. Do I have any questions or concerns?

Nope. No questions. No concerns. But I do want an immediate referral to a rheumatologist BECAUSE I’M PRETTY DAMN SURE SOMEONE NEEDS TO CONFIRM AN ANKYLOSING SPONDYLITIS DIAGNOSIS.

Ahem, sorry for shouting. I’m mad (mostly at myself, but yes my doctor is taking a hit too). We’ll get to that in another blog – this one’s waaaay too long already.

I’m also excited, and nervous, because I got the referral I so desperately needed.

My first appointment with the rheumatologist is this week, and I want to LOVE him like he’s the last vampire on earth! I want him to confirm my AS diagnosis, and I want him to take my pain away. Yeah, that last bit…I know it’s not possible, but I wouldn’t be the girl wearing rose-colored glasses at the back of the plane if I didn’t dream big.

I’ll let you know how it goes, but while we wait, don’t forget about the Sharing is Caring Giveaway! Prize packages are coming together – will share pictures soon! Hit the subscribe button, as well as those share icons below for a chance to win.

Also, if you have any suggestions on how to prepare for my first appointment with the rheumatologist drop them in the comments below. Still need all the help I can get!

Until the next blog – peace out pain sufferers.

Current pain level 8/10.

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Birthday Blog – Open Letter – And a Gift for You

11 Comments / Living With Chronic Pain / Edith / January 13, 2020

Hey Everybody,

I’ve been trying to figure out how to start this (supposed to be humorous) birthday blog for a couple of days now. Nothing’s coming to me, which usually means I’m not on the right track.

If you know me as a writer, or you’ve checked out the Bad Things Come in Threes home page, you know I’m a pantser. Definition: a writer who sits down and types whatever pops into their head as opposed to someone who outlines or drafts in advance.

I sit down, look at the blank page, hit the keys, and whatever I’m working on begins to emerge one word at a time. I’m also a writer who has to edit as I go. In fact, I can rarely move on until I feel every sentence I’ve crafted thus far fits together and does what I’m asking it to do.

And there it is…

The reason for today’s blog.

What is it that I’m asking these chronic pain blog posts to do? Entertain? Inform? Inspire? Bring joy? Words are power. Put them together well, and you can have a positive impact on many. Get it wrong, and there may be no end to the shit storm you stir up.

So why risk it? Why put words on paper? And why the hell would anyone post the ramblings of their diabolical mind on the Internet?

Excellent questions.

The answer?

Fuck, if I know?

Maybe it was getting the Ankylosing Spondylitis diagnosis, right before turning fifty? Maybe it was because I hadn’t written anything in a couple of months, and I was missing the feeling of accomplishment that comes with crafting a great line? Maybe I’m just bat shit crazy, and a glutton for punishment?

Whatever the reason.

Challenge accepted.

If you know me, you know I’ve been telling people for the last four years I’m fifty.

It’s awesome. You should try it.

People will say, “Wow, you look young for your age!” and you can be like, “Gee, thanks!” and feel really good about getting older.

That’s my strategy, and I’m sticking to it. And according to Canadian country music superstar, Brett Kissel (who thought I was thirty-five when we met outside the Grand Ole Opry – Ryman Auditorium), it’s working! Mind you, he didn’t see me try to navigate any stairs in Nashville this weekend.

The truth is, in head, heart, and spirit, I’m a solid thirty-five. In body? Not so much. In body, I’m pushing eighty-five. Especially during a major flare-up like I was suffering this past week. Yep. I walked. Hell yeah, I danced. Damn straight, I drank too much alcohol, ate too much inflammation-causing food, and went to bed too late.

The result?

Knees that randomly gave out on the street, hips that painfully locked and popped, shoulders that ached constantly, and an extra sore and stiff back on waking up every morning.

Was it worth it?

Yes. Yes. YES!

For me, it was. Turning fifty in Nashville, with Roy holding my hand, and my best friends drinking beer beside me was worth the daily 9/10 pain levels.

It’s a trip I’ll remember forever, memories that will make me snort-laugh when I’m alone, a milestone birthday party that was everything I wanted it to be and more.

How does a girl get so lucky?

Fuck, if I know?

What I do know is…I’m feeling grateful. Grateful for the love and support I’ve been getting through this blog, and I want to share.

So here’s my birthday wish – let’s grow this chronic pain blog together. Let’s wrestle our aches to the ground, give them a humorous elbow to the face, bobble back up like a Weeble Wobble, and pop the top on a can of fuck this shit.

I’m livin’ for today, and right now, for whatever reason, sharing my chronic pain story matters to me. So here’s the deal. I’m asking for your support in getting my On The Road to Greater Wellness…or Fuck Me, I Just Want to Feel Better Blog out there through social media shares, comments, word of mouth, etc.

Any way you can help me accomplish my sharing is caring goal is a gift that keeps on giving, and I am and will continue to be, grateful to all who bumble along this journey with me.

So, in the spirit of sharing, I’m doing the same with a FUCK CHRONIC PAIN giveaway.

Yep! You read that right. I’m going to be giving away two Sharing is Caring prize packages worth approximately $150.00 each!

Packages will include some of my favorite gizmos and gadgets for easing the spoonie lifestyle. More to come on that – with photos – but for now, here’s how to enter.

Hit that subscribe button, and if you like my blog posts and think I have something to say that’s worth reading, then please share.

Share. Share. And share some more, because one prize package will go to the subscriber who reaches the most people on social media between now and the end of February.

The second prize package will be a random giveaway to one blog post subscriber in honor of my fiftieth birthday.

That’s it. That’s all you have to do. Subscribe to my blog – I promise the only email you will get is a notification when a new blog is posted (plan is to aim for one post a week).

Help me get the word out by sharing the most through social media.

And BAM, you could win a Sharing is Caring prize package!

Yeehaw! I’m excited!

Until the next blog – peace out pain sufferers.

Current pain level 9/10.

March 1, 2020

** CONTEST IS NOW CLOSED. THANKS TO EVERYONE WHO SUBSCRIBED TO ENTER TO WIN!

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‘Cause I’m Leavin’ on a Jet Plane…

6 Comments / Living With Chronic Pain / Edith / January 9, 2020

You know the song. It’s a John Denver Classic. Recorded by Peter, Paul and Mary, in 1969 – I wasn’t born in 69, but my husband (Roy) was so we’ll call it a good year. Chantal Kreviazuk released an awesome cover of the song in 1998. I was 28 in 98.

By that point, I was an undercover Fibromyalgia warrior, working a full-time job, keeping the fridge stocked, the house clean, the gardens weeded, and chasing a wayward dog through the streets of town.

Like most women I know (with or without chronic pain), I was trying to do it all while still being a good (*read the best ever) wife, mother, daughter, employee, and friend.

I was also trying to make it look easy, and even though it may have looked like I was successfully keeping my shit together, I was in pain, battling fibro fog, and keeping my eyes open with toothpicks during my morning commute.

And, YEP, now that one freaking line is stuck in my head like my vinyl is scratched and the needle is stuck.

…leavin’ on a jet plane. Don’t know when I’ll be back again…

Two things:

If you haven’t guessed already, I’m going on vacation for a couple of days, and as much as I’d prefer to leave them on the counter at home, my chronic pain issues are coming with me.

Bitches.

Also, I’m sure you already figured this out, but this isn’t gonna be your typical how to travel with a chronic illness blog. There are plenty of excellent blogs, vlogs, and legit articles on the subject already out there.

This isn’t one of them.

I’m not that girl.

The one who plans ahead to deal with the inevitable pain flare-up caused by cramming her ass into an airline seat whose padding has long since given up any support role it may have once performed in the service of paying customers.

Nope.

I’m the girl who suffers from a severe case of FOMO (fear of missing out). The one wearing the rose-colored glasses at the back of the plane squirming in the shittiest seat because I can’t wait to get to where I’m going. Also squirming because my fucking back is killing me, and we’re only thirty minutes into a seven-hour flight.

So why do it? Why travel when I’m already in so much pain? Because I’m never, REPEAT NEVER, going to be pain-free. So, waiting for a pain break? Yeah, stupid plan…might as well wait for time to stop…and if it does, I’ll be dead, so basically, no chance to travel after that.

Fuck that shit – I love to travel.

I want to go everywhere, see everything. Meet new people. Talk to strangers. Experience different cultures. Try new foods. And the beer – don’t even get me started on the local brews.

A large draft of Super Bock on the beach in Porches, Portugal, or on any beach in Portugal’s Algarve region, is TOTALLY worth the aches and pains of a four-hour car ride before boarding the first plane in Toronto.

Plus, a bum-numbing wait for the second plane in Lisbon.

And the long walk to the car rental place in Faro.

Not to mention cramming my already sore body into the back seat of a European tin can with two suitcases and a BFF.

God! Sounds like a nightmare, right?

Hell no!

THAT was an adventure, start to finish, and I’d pack my Aleve to do it again in a heartbeat. And again. And again.

In fact, that’s my plan for 2020. Travel. Travel. Travel.

To start off my living with chronic pain world tour, I’m grabbing the big 5 – 0 by the ears and giving it a big welcome kiss…in Nashville.

That’s right! I’m celebrating turning fifty – in Nashville!

So you may be asking yourself, why Nashville? Why not somewhere warm and beachy?

Easy. Country music, cowboy boots, craft beer, Peg Leg Porker BBQ ribs, and my best friends celebrating my half-century survival by dancing our way up and down Music Row with our hubbies in tow.

Need I say more?

Yep, I’m about to throw down in Nashville and party like I’m forty-nine! I’m even planning to follow some of the advice I discovered while researching traveling with chronic pain.

Top 5 Tips For Traveling With Chronic Pain

Best Tip No. 1
Dress comfortably for the trip. *Don’t be me. Skinny jeans are not your friend on a plane.

Best Tip No. 2
It HURTS to type this, but bring comfortable walking shoes. This is a shoe lover’s nightmare! Damn you, Ankylosing Spondylitis! *Stuffs all season wedges into suitcase just to spite.

Best Tip No. 3
Stock up on drugs – the over the counter pain relieving or prescription kind – not the white powdered kind you cut with a credit card on the back of the toilet in the men’s washroom with a stranger you just met who’s now your new BFF.

Best Tip No. 4
Stay hydrated. Got it covered. Mental note – drink the water Roy hands me between cold beers, frozen margaritas, and vodka shots.

Best Tip No. 5 (and possibly the best tip of all)
Be in the moment. Take photos. Get crazy. Have fun. Take a nap. Whatever your vacation means to you is what matters most. What’s the point of traveling if you’re not getting what you need out of it?

Hey, since sharing is caring, why don’t you drop a comment below and tell us what your best tips are for traveling with chronic pain?

Or, if you know of someone who might enjoy a little chronic pain travel humour go ahead and click one of those share buttons!

Finally, before I go…leavin’ on a jet plane…I know not everyone with chronic pain can travel. If that’s you, I get it! Sometimes reaching to answer the phone, or going from the bedroom to the living room can feel like a trip from hell, take three weeks to recover from, and cost too much in emotional and physical effort.

That’s okay, too. If you feel up to it, tell us where your happy place is. These days (when I’m home), mine’s the nest chair in the living room with my furry blanket.

Until the next blog – peace out pain sufferers.

Current pain level 6/10.

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When The Truth Is A Pain In The Ass

Leave a Comment / Living With Chronic Pain / Edith / January 6, 2020

Wow! Here we are. Blog number three. This is happening. I’m excited. Hopefully, this post is not the Bad Things Come in Threes equivalent of finding someone else’s hair in your soup.

Yep. I’m that girl. The one who gets the soup hair. Every. Single. Time. I’m not even looking for it. I’m just THAT lucky.

Oh, God! Now I’m gagging. Soup hair is gross. Trust me.

When you’re the genetic equivalent of a walking, talking bag of pain, sometimes life sucks.

There’s no sugar coating it.

Scratch that. Yes, there is. I stumbled along that road for the last 24 years. I’m fine. Things are great! Never better, how about you? Oh, this limp? Just a little hip malfunction, no big deal.

Well, yes. YES, IT IS a big deal.

In fact, it’s Ankylosing fucking Spondylitis and I’ve been walking around undiagnosed and in physical freaking pain for freaking ever. How you doin’, eh?

Why? Why? WHY do we downplay or symptoms and suffering? Who are we trying to impress with our stoicism in the face of debilitating pain? Who are we trying to protect from the aches that accompany us daily? Or, has it simply been drilled into our malfunctioning brains that – I’m great, thanks for asking – is the standard (read polite) response to the question, how are you?

No matter the reason. It needs to stop. I need to stop. Or maybe, we need to stop asking the question if we don’t necessarily want to hear the real answer.

Oh, hey! You-hoo, Edith. Hi! *Quick hug that hurts the Fibro tender points in my shoulders. Oh, my God, it’s been too long. How are you?

Well, I’m about to pass out from the effort it’s taking to stand upright on my shitty-ass pins to talk to you, but other than that, I’m great. How are you doing? How’s it going with your Avocado Life blog?

*Insert sound of crickets here.

Personally, I think it would be fucking hilarious if chronic pain sufferers went around telling the truth.

Friends, family, and near acquaintances on the receiving end…probably, not so much.

Yeah, yeah, yeah, there’s definitely a way to be more graceful about expressing our thoughts, feelings, and pain levels in a way that doesn’t elicit shocked looks and blank stares.

But where’s the fun in that?

And besides, I’m done pussy footing around, damn it. I’m in pain. Full stop.

So the next time we meet in the Walmart parking lot and I have a cart full of crap I didn’t need, but the price was right, and this and that was super cute, and no fifteen black sweaters is not fourteen black sweaters too many. Maybe ask me if I need a hand loading bags into my trunk. I’ll probably say, no…I’m good, but why don’t we meet for lunch later and we’ll drink margaritas, discuss the health benefits of eating avocado, and talk trash about our significant others.

Now that sounds like a rockin’ good time.

How do you handle the well intentioned how are you questions? Have a great line to share? Drop it in the comments below. As you can see…I need all the help I can get!

Until the next blog – peace out pain sufferers.

Current pain level 8/10.

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The Best of Intentions Vs. The Vulcan Mind Fuck

12 Comments / Living With Chronic Pain / Edith / January 4, 2020

Let’s be honest, publicly stating your intention to start a blog is easy. Following through with a second witty, well-written, and engaging post? Well – that’s the hard part isn’t it?

Here’s where I’m at…

Blank page? Check. Curser blinking? Check. Fingers happy to be back on the keyboard? Check. Words flowing like a river of liquid gold, or in my case, molten chocolate lava from a perfectly baked cake? Not so much.

As I write this, I’m going through withdrawals. And not the good kind. Like the – I’ve got the shakes because I haven’t had McDonald’s in a week – kind.

Nope. I had a keto-fied lettuce-wrapped Quarter Pounder with Cheese yesterday.

These brain zapping; tinnitus-amplifying withdrawal symptoms are definitely not the Golden Arches equivalent of a Happy Meal. More like the Arches are short-circuiting and experiencing sudden surges of electricity.

Picture that classic movie scene. Camera focused on the neon sign above the drive-in snack shack. You can hear the buzz. See the bright lights flicker. Then BAM. The power surges, and sparks fly. People scatter. Cover their heads. Run for safety. You get the idea.

Unfortunately, when your brain is withdrawing from Selective Serotonin Reuptake Inhibitors, or SSRIs for short, there’s nowhere to run to. Nowhere to hide.

At least not in my case. And sadly, I’ve been here, done this before. Multiple times.

The drug of choice this time around is Cymbalta (brand name) or, if you’re like me, and you get your prescriptions filled at Walmart, Duloxetine (generic name).

Why have I elected to stop taking the Duloxetine – without consulting my doctor – you ask? Good question and a great opportunity for a consumer warning. *Don’t be like me. Touch base with your medical expert if you’re thinking about any drug treatment changes.

Seriously. Consult your health guru.

In my case, the simple truth of the matter is…SSRIs don’t reduce the pain I feel on any level, and the side effects (nausea, dry-mouth, fatigue, diarrhea, constipation, dizziness, sweating, difficulty sleeping, dry hoo-ha and difficulty orgasming) are not worth increasing the amount I take to see if I might (might) benefit from popping more pills in a higher mind-fucking dose.

Errrch – brakes on. Did she say dry hoo-ha and difficulty orgasming?

YES. Yes, she did. And ain’t nobody got time for sex if there’s no promise of the big O at the end. Am I right? And this girl likes sex (so does her husband of 25 years).

She likes the big O even more. (She also likes her husband.)

So, the Cymbalta, like every other SSRI I’ve tried, has got to go. Buh-bye.

Any hoo-ha, moving on.

I was first (mostly self) diagnosed with Fibromyalgia in 1996. Or was it 1997? Honestly, I can’t remember. But man, getting that FMS diagnosis was everything.

EVERYTHING.

(My FMS and eventual Ankylosing Spondylitis diagnoses were both cluster fucks unto themselves, so if you’re still reading this, and you’re interested in more – stay tuned for future blog posts.)

Finally! A reason for the extreme fatigue and random flashes of pain I was experiencing daily.

I wasn’t a lazy new mom, unwilling to do it all. Work full time, cook, clean, keep baby alive, keep food in the fridge – oh, and – by the way, your garden needs weeding.

I wasn’t suffering from postpartum depression – which is a REAL thing – and something that was considered in my case, but the pain issues I was having didn’t fit the symptomology.

I wasn’t an all around bad person (this is where my brain goes because this is how my brain is hardwired).

Nope.

I had a syndrome. A medical condition with a name. The pain was real and not a figment of my overactive imagination. Hallefuckinglujah! Praise baby Jesus.

Now make it go away.

My first ever dance with SSRIs was with Effexor, prescribed to me by the Fibromyalgia specialist I was referred to. At that point, I would have ingested anything – ANYTHING – to feel better. To feel like myself. To feel normal. So that’s what I did.

I took an extremely high dose of Effexor daily for several years. Miss a pill. Miss a lot. Take the pill(s). Miss a lot. Basically, I was a walker before zombies were mainstream cool.

My husband, who is not Daryl Dixon (but who communicates with the same non-verbal pattern of grunts, groans, and militant facial expressions), none-the-less wanted to save me from my own personal zombie apocalypse, and so, he insisted I cut that Effexor shit out. (His words.)

My response included a lot of heartfelt F-bombs and desperate tears which eventually led to an acceptance that he was right and I was wrong. Not an easy thing to admit back then. Not an easy thing to admit today. (Thankfully, the he’s right, I’m wrong situation doesn’t come up often.) *Insert his narrow eyed/ throat grunt combination here.

Compared to my first prescription drug withdrawal, the low dose brain zaps I’m suffering now is a walk through knee-deep zombie guts compared to the high dose three-million volt live-wire surges I suffered back then. There were other withdrawal symptoms, too. Dizziness. Headache. Nausea. Vomiting. Irritability.

Irritability. SERIOUS IRRITABILITY.

I stayed away from SSRIs for several years after that, had a second beautiful baby boy while drug-free, and tried not to steak knife my husband in the heart every time he told me my pain issues were mind over matter.

He meant well. He truly did. It’s why he’s still alive today.

The thing is, I wasn’t taking responsibility for my own health during those early years. The FMS specialist told me to take Effexor, so I did. My husband told me to cut the pills, so I did. My body told me to move less, so I did. I drifted along in a sea of pain, occasionally asking my doctor for a magic pill that would make me skinny, happy, and pain free.

My doctor would laugh (because she thought I was being funny), and then prescribe another SSRI for me to try. The results? The same. No significant improvement in pain levels, and an eventual brain spasming withdrawl.

So why keep trying? Because, I’m still in pain. And the magic pill hasn’t been invented yet. At least, not that I’m aware of.

And to be clear, I’m not knocking SSRIs. If they work for you, sweet! I’d love to know more about your experience and successes, so please do share, and drop a comment or suggestion below.

Until the next blog – peace out pain sufferers.

Current pain level 8/10.

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Hello Spoonies!

14 Comments / Living With Chronic Pain / Edith / January 1, 2020

The On The Road to Greater Wellness…or Fuck Me, I Just Want to Feel Better Blog

Pain. All day. Every day. Sometimes mild. Often times severe. On occasion – screw it, I give up and am going back to bed debilitating.

I can’t remember a pain free day. Not since my first pregnancy and the birth of my son in 1996.

1996.

If you suck at math like I do, 2020 – 1996 = 24 years of physical pain.

24 years x 365 days per year = 8760 days of physical pain.

8760 days (give or take a day depending on when this shit started), plus 1 for each sunset I live to witness, add that up – and yep – no matter how bad you are with numbers, that’s a lot of pain.

A LOT of pain.

And a (proverbial) pain in the ass, but that’s a whole other blog right there.

So, why do I feel the need to put this out there? Why share my pain journey with you? Why now? Well, as the saying goes, sharing is caring. Also, I’m turning fifty.

FIFTY!

The big 5 – 0.

The diabolical plan was to be in the best shape of my life when I hit fifty.

The truth is, I’m not. In fact, I’m so far from the best shape of my life, both mentally and physically, that I’m freaking out a little bit. Okay. Maybe more than a little bit.

Maybe, just maybe, I’m freaking out a lot.

For a lot of different reasons.

So, here’s the thing. I’m ready to be fifty. More than that, I’m ready to share my chronic pain story. All of it. The good. The bad. The ugly.

And hey, I’m a writer. Writing is what I do. And for a lot of different reasons, I temporarily put that passion on the shelf, too. More on that later. For now, enough is enough. Time to get back to it and to set some new challenges and some new goals.

This is it…

The challenge – be brave, be bold, be honest, and finally, FINALLY, have the balls to say, I’m not fine. I’m not okay. My fucking knees hurt, my hips hurt, my back hurts, my shoulders hurt, my brain hurts…you get the idea.

The goal – be the one in charge of my mental and physical well-being and to share my failures, progress, and successes with you. Seems simple enough, right? Well, stick close my lovelies…cause I’m about to go twelve rounds with my chronic pain issues, and all bets are off as to who will come out on top.

Hope you come along for the ride, cause I’m positive I’m gonna need all the support I can get. And if my words can help one person, one day, with maybe one laugh along the way, well then shit, maybe – just maybe – this will have been worth the mental effort and the sore finger joints from typing for too damn long.

Until the next blog – peace out pain sufferers.

Current pain level 6/10.

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