Winter – Love It or Leave It

8 Comments / Living With Chronic Pain / /

I have a love/hate relationship with winter.

From December 1st to January 1st – I see winter through a Thomas Kinkade lens.

It looks something like this:

Fluffy flakes of pure white drift peacefully to settle on the bank of a pristine slow-moving creek meandering by a cobblestone cottage. A snow-covered roof with smoke purling from the chimney hints at the roaring fire within. Soft yellow light spills from frosted windows promising warmth and welcome. The front door, decorated with an evergreen wreath, greets friends and family arriving in horse-drawn sleighs, chased by children and dogs alike.

From the kitchen, the smell of warm pie wafts through the house, rooms perfectly decorated with twinkling lights and glittery ornaments. (In Roy’s world, there’s always pie. In my world, picture a ruby red glass of Chianti with Ludovico Einaudi playing quietly in the background.)

Ahh, the holiday season! Seen through my rose-colored glasses, it is beautifully idyllic.

And with the re-boxing of the Christmas decorations and the arrival of the New Year in Canada, completely unfuckingrealistic.

The stark reality:

Frozen landscapes fraught with slip and fall dangers (just ask Suzanne).

Minus forty wind-chills intent on freezing your ass to the leather seat of your car.

Snowdrifts covering driveways and sidewalks cleared less than six miserable hours ago.

Now pile on the physical pain.

If you’re like me, you don’t do well in winter. My bones ache, my muscles hurt more than usual, and as a result, I move less. Add in brain fog, mood swings, and a crap diet, and by the end of February, I could probably commit murder using my press-on nails as a weapon and have a solid argument for acquittal.

“But your Honor, in my defense, he WAS breathing loudly.”

“Yes, of course, Ms. Lalonde. A completely reasonable justification for disemboweling someone with an impeccable French manicure.” Gravel hits wooden circle thingy you see on TV with a loud bang. “NOT GUILTY by reason of temporary weather insanity.”

*Cue cheers from the gallery.

It's a proven fact:

Weather can (and in my case does) affect chronic pain levels in the body.

Barometric pressure changes can cause joints to swell, increasing pain signals to the brain.

Cold snaps can constrict blood vessels and reduce blood flow, causing muscles, tendons, and ligaments to tighten.

When you live in the north, severe weather and barometric pressure changes are a given.

So, yeah. It shouldn’t come as a surprise when your body becomes your prison, and the sentence lasts until well past spring.

Not gonna sugar-coat it:

It’s nearing the end of February, and I have reached the nails as weapons threshold on my sanity.

Seriously, I have to get myself out of this chronic pain prison before someone gets hurt.

So, yeah. I’m tapping out, packing my flip-flops, and heading south.

My next blog post will be coming at you from Florida. Cause I can’t take it anymore.

Right now, I’m a toxic combination of several Wizard of Oz characters. I have the Tin Man’s joints, the Scarecrow’s brain, and the Wicked Witch of the West’s evil disposition.

Trust me. The woman is a bitch, and she can’t be killed with hot water. I know. I’ve tried.

Beyond long soaks in the hot tub, bath, or shower, there are things we can do to combat weather-related chronic pain episodes.

Unfortunately, they are remarkably similar to the everyday things we do to combat our everyday chronic pain episodes.

Top 5 Ways to Reduce Chronic Pain in Winter:

  1. Keep moving – Apparently, now is not the time to neglect your exercise routine in favor of Netflix.
  2. Maintain healthy eating habits – A stable diet of comfort Quarter Pounder’s will not help you avoid winter weight gain or food related inflammation.
  3. Stay hydrated – Drinking water is vital in winter as dry air can make you feel extra tired and achy.
  4. Continue to take your medication and supplements on time – Don’t be me! Don’t let brain fog interfere with routines. Set reminders to take your pills!
  5. Dress for the weather – Layer, layer, layer. Mittens and those cute pom-pom hats that destroy any hope of a good hair day are your chronic pain friends. Indoors, furry blankets are a lifesaver. 

*Reminder – one of the items in the Sharing is Caring – Fuck Chronic Pain care packages is a furry blanket. YAY! Give away happening March 1, 2020.

Other recommendations:

I know not everyone can up and leave when the urge to maim strikes a deep chord. So, I also recommend the following:

Employ relaxation technics – Read, sleep, breathe deep, light a candle, sit under a heat lamp, pull the furry blanket over your head, buy yourself some tulips, look at pictures of puppies.

*WARNING: Do NOT go out and adopt a puppy on impulse. Take many, many weeks to consider if this is a rash decision based on weather insanity. If you still want a dog in April/May when the weather finally turns, consider if this urge is due to spring euphoria. If not, and you still want a dog – go get yourself a dog.

Stay in contact – send messages to friends, swap recipes with fellow food lovers, share funny anecdotes, attend aquafit classes. Try to connect with the people you don’t have a desire to remove from the planet on a deeper level than posting a meme on Facebook can provide.

Or don’t do any of these things.

If you need to be Miss Havisham, shut away in your house with all the clocks stopped, be Miss Havisham. Just keep your wedding dress away from any open flames.

On that note…time to wrap up this blog, cause I gotta go dig out some shorts that still fit.

How about you? Winter? Love it or leave it?

I think we’ve established, I’m a leave it kinda girl, but if you have any winter survival suggestions or even winter love stories (if such a thing is possible), please share. 

Pretty sure, I’m not the only one in the tribe who can use a little distraction from the weather!

Until the next blog – peace out pain sufferers.

Current pain level 8/10.

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The Benefits of Blogging About Chronic Pain – You’re All In The Sharing is Caring Club Now

16 Comments / Living With Chronic Pain / /

Happy Valentine’s Day, my Lovelies!

As a chronic pain blogger, I have no idea what I’m doing. All of this, the blogging world, is new territory for me. I want to be good at it, and seeing how I’m an all in kinda girl, I wanted to see immediate results without actually having done any advance research on what makes a blog successful.

I had an itch to write, and I thought I had something worth saying about chronic pain and my wellness journey. So, I jumped in, clueless about what I was getting into.

In less than a week, I built a new website and posted my first blog.

Job well done. Pats on the back, self high-five, and all that.

Now what? Post two. Post three. Post four.

*Looks at stats. Has two subscribers, myself and one other. (Shout out to subscriber number two – thanks, Gabby B!)

Man! Creating a blog is hard work. Add in some chronic pain challenges and cognitive difficulties, and growing a blog becomes even harder freaking work.

CONFESSION – before I hit the publish button on my first post on January 1st, 2020, I set a target of one hundred subscribers by March 1st. Two months seemed like a reasonable amount of time considering I have 700+ Instagram followers, 1700+ Twitter followers, 101 Facebook friends, and 30 Pinterest followers.

Therefore, one hundred blog subscribers in two months – should be a piece of cake, right?

Wrong.

Wrong. Wrong. Wrong. On so many levels – wrong!

Let’s just say…I’m not going to reach my goal.

My current number?

Twenty-five subscribers in six weeks.

Who knows? Twenty-five subscribers could be a reasonable growth rate. Maybe I’ll Google it? And for the record, I’m still one of those subscribers. So, if you’re in to win one of the Fuck Chronic Pain Sharing is Caring prize packages, your odds are pretty damn good!

But, yeah, zero to sixty with my hair on fire. That’s me.

Unrealistic expectations. Meet reality.

Yep, I’ve got some decent numbers in terms of social media followers, but what I’ve come to realize is having followers is not the same thing as having active engagers. Hearts and likes don’t amount to much in terms of personal value or connection.

And what I want…what I really REALLY want…is to connect. To share stories, hardships, successes, and experiences. Herein lies the true value of starting a chronic pain blog – finding your people.

YOU. Yes, all of YOU are my people. My fellow spoonies and pain sufferers (or not). You – who like to comment and share. You – who want to read and quietly observe. You – who see me in person and let me know you’re reading, you’re laughing, and you’re connecting with my words.

That’s my reward, my reason to keep going, to keep writing, and to keep sharing.

Plus, you guys are helping me along my wellness journey more than you know.

Katrina, through her comment on the Reverse Stereotypes and Cautious Optimism post, reminded me the rheumatologist talked with me about diet to reduce chronic pain. I needed the reminder, and it came from someone I haven’t met, but who is, never-the-less, still part of the sharing is caring tribe.

Alice, Sharron, Lyse, Suzi – so many of you have shared your chronic pain experiences. As members of the tribe, you’ve helped me realize, I’m not alone in my chronic pain woes or my use of the F-bomb as a coping mechanism.

Thanks to this blog, I’m reconnecting with family and friends – in a deeper, more meaningful way, and bonus, I’m reaping the benefits of meeting new people.

I’m learning things, both about myself and the autoimmune diseases I have. 

With your help, I’ve rekindled my passion for writing, and I’m learning new technological tricks, like how to build a website. 

I’m also learning what I don’t like about the blogging world, such as non-stop ads and pop-ups trying to sell me shit I don’t need. And blogs that promise to deliver you from your pain. Seriously, I won’t do that to you guys.

Regardless of whether or not twenty-five subscribers is a big gain or small, I’m calling connecting with all of you a huge win.

So, to my twenty-four subscribers – thank you! 

To those of you non-subscribers reading this – thank you! 

To those of you who share on the blog, on Facebook and Pinterest, on Twitter and Instagram – thank you!

As a member of the sharing is caring Club, you get a say in what goes up on the blog. I have a three-page list of topics I want to write about, but I’m interested in hearing about what you’d like to read.

Want a post about gardening with chronic pain? Let me know. Want some tips on starting a keto diet to reduce inflamation? Drop the suggestion. Don’t like something you read or want to offer some advice for ways to improve my website? Please email me via the contact page.

I’m open to positive suggestions and constructive criticism. I’m not down for any negativity or unnecessary drama, and I’m guessing, since you’re here, you aren’t either!

For now, wishing you all a low pain week, and if you feel up to it, leave a comment and tell us how you’re doing. As for me, winter is playing havoc on my joints, which makes me think next week’s post might have something to do with surviving the cold months when you’re living with chronic pain.

Until the next blog – peace out pain sufferers.

Current pain level 7/10.

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Sharing is Caring – Fuck Chronic Pain Giveaway

7 Comments / Living With Chronic Pain / /

Here it is, the Sharing is Caring – Fuck Chronic Pain giveaway video! I finally figured out how to upload media files to the blog. Will probably crash the internet as soon as I post, but hey, maybe one or two of you will get to see it first!

Entering to win one of two prize packages worth approximately $150.00 each is easy. Just subscribe to my blog. That’s it! One random winner will be selected.

The second prize package goes to the subscriber who shares the most Living with Chronic Pain blog posts on social media between now and the end of February. Be sure to tag me in your posts to make sure I don’t miss any.

Facebook. Pinterest. Instagram. Twitter. Leaving comments on the blog. It all counts!

Some great items included to ease the spoonie lifestyle.

If you have any questions, send me an email via the contact page.

Winners will be contacted on or about March 1st, 2020. Prize packages to be sent by mid-March.

Good luck, everybody.

Apologies in advance for the nasally voice and terrible camera work! Still working on honing my blogging/vlogging skills.

For now, peace out pain sufferers.

Edith

Clearly I need help making videos! Gah, my voice...do I really sound this nasally in real life?Anyhoo.Here it is, the final Sharing is Caring prize package!Super easy to win one of two prizes worth approximately $150 ea.1 - Subscribe to my blog - one random winner will be selected to receive a prize package.2 - Subscribe to my blog - and share the heck out of my posts on Social Media including Facebook, Pinterest, and Instagram if you can figure out how...Tag me so I know you shared and don't miss any! Most prolific sharer/engager will receive the second prize package. (Comments and engagement on the blog will go in your favor as well.) Blog link: edithlalonde.com/blog/Like I said! Super Easy. And Lots of great items here to ease you or someone you love through some of your chronic pain woes!Winners will be announced on or about March 1, 2020. Prize packages to be shipped to winners by mid-March.That's it!Good luck to all.Peace out pain sufferers.Edith#chronicpain #ankylosingspondylitis #fibromyalgia #arthritis #backpain #spoonielife #spoonie #sharingiscaring #chronicillness

Posted by Edith Lalonde on Tuesday, February 4, 2020

Current pain level 7/10.

March 1, 2020

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

Chronic Pain Prize Package
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Brain Drain – A Blogger’s Nightmare

14 Comments / Living With Chronic Pain / /

I’m all over the place this week, and mentally, I’m having a hard time getting my brain to settle. For whatever reason, the Fibro fog has been thick the last couple of days, and trying to express a coherent thought is like trying to communicate through a big ass cotton ball covering my head.

The worst part is…I’m a writer. I write for a living. I write for pleasure. I write when I’m happy. I write when I’m sad. I write when I have something to say, and I write just for the sake of putting ideas on paper.

I write.

And to write means, you need to remember some basic words. Losing words is like cutting off an arm for me, and I’m not talking big words. These are not the supercalifragilisticexpialidocious of words I’m struggling with.

Nope.

It’s your everyday words like File. Bacon. Gloves. Truck.

Sounds impossible, right? An exaggeration?

Well, it’s not. Just this week, I was telling Roy, “I had to go to… ahhh… to… ahhh…”

“Walmart,” he supplied.

Yep. I couldn’t produce the word for the store I went to three times. And why did I have to hit up Walmart three times? Because every time I went, I forgot to get multiple items on my grocery list for the couples’ snowmobile weekend.

THREE. FREAKING. TIMES. IN THREE FREAKING DAYS!

Not only did I forget to purchase items on my list, I forgot I had a list, and to add insult to injury, I was unable to express my frustration in simple words.

Of all the symptoms associated with Fibromyalgia, cognitive dysfunction is the hardest pill for me to swallow.

  • Memory loss.
  • Inability to concentrate.
  • Becoming easily distracted.
  • Confusion.
  • Forgetfulness.
  • Misplacing objects.
  • Difficulty carrying on a conversation.
  • Inability to retain new information.
  • Struggling with tasks done a thousand times.

There are times the cognitive difficulties – or brain drain – I suffer, impacts my day-to-day life more than the physical pain associated with my conditions.

Walking into my boss’s office and forgetting why I’m there. Stopping mid-conversation because I can’t remember what point I was trying to make. Thinking of a creative idea or a great line and losing it before I can write it down. Reminding myself, I have an appointment scheduled and forgetting it five minutes later.

None of these seem like a big deal on their own, but add one brain fail on top of the other, day-after-day, and it feels like you’re constantly swimming upstream in a river of molasses with floaties tied to your ankles.

So I did some research. What I learned is not good news. While “fibro fog” or “brain fog” is a common complaint among people with Fibromyalgia, the cause is not fully understood. Furthermore, it’s not a symptom that gets much attention from the medical and research community.

Fucking great.

What I did find were a lot of suggestions, most of them common sense, that can be applied to combat brain fog.

  • Avoid caffeine (causes sleep disturbances).
  • Use a planner (great when you can remember to use it).
  • Organize your space (cuts down on squirrel distractions).
  • Eat healthy foods (well duh).
  • Take your medication on time (super important to avoid brain buzz when taking SSRIs).
  • Reduce your stress (easier said than done).
  • Exercise regularly (no surprise there).
  • Establish routines (impossible to do on a couples weekend).
  • Avoid multi-tasking (HA! Can someone tell Roy I can’t cook and clean at the same time).
  • Breathe deeply (sure, when it doesn’t hurt your chest).
  • Get better sleep (uhh, people with Fibro rarely get sleep, never mind better sleep).

My Simple Strategy for Combating Brain Fog

STOP what you’re doing.

  • Trying to sew a dress and can’t figure out how to thread the needle? Put it aside and walk away.
  • Burnt the cookies because you forgot to put the oven timer on? Throw them in the garbage and walk away.
  • Reading the same paragraph over and over? Shut the sexy romance book and walk away.
  • Basically, go for a walk. Or a bath. Or a nap. Anything that requires little to no brain cell usage.
  • Repeat as often as required.

Giving advice is so much easier than taking it, but I’m going to take my own now. This blog was a bitch to write, it’s taken me six days, so I’m walking away. I’m going to hop in the hot tub and then take a nap.

Hopefully, a few of these rambling words resonate with others, and if not…well, I tried!

Until the next blog – peace out pain sufferers.

Chronic Pain and Brain Fog

Current pain level 5/10.

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Giving Up Perfection to Find My Balance

11 Comments / Living With Chronic Pain / /

Perfection is killing me.

Okay. Sure. I’m being dramatic. I’m not perfect. Not even close. My family knows it. My friends know it. My colleagues at work know it.

Doesn’t mean I don’t jam myself into tight corners with impossible to achieve perfection situations.

Yep. I’m an all-in kinda girl. Have been forever.

If I’m exercising, you can be sure I’m going too hard, too fast. If I’m cutting out Diet Coke, I’m going cold turkey and suffering through a major caffeine withdrawal. If I’m trying to lose weight, I’m trying to do it overnight, which means I’ve probably cut my calorie intake to less than a thousand calories per day.

Same is true when I get stuck in reverse mode.

If I’m eating Quarter Pounders with Cheese – I’m probably eating one a day. If I fall off the Diet Coke wagon, I’m cracking open a can at breakfast. If I’m working on a novel, I’m spending a ton of extra hours, butt in a chair, trying to get words on paper – meaning exercise – yeah, not gonna happen.

Problem is – good habits or bad – none of these over the top patterns of behavior are sustainable. Basically, I’m setting myself up for failure. I know it. There’s no shock and awe here. No big revelation.

So, why do it? Why am I still trying to reach a state of personal perfection when it comes to diet, fitness, relationships, writing, working, home decorating, etc.?

Well, if only you could hear what goes on in my head, you’d understand.

Be perfect. You can do it. If only you tried harder. If only you did better. If only you…

Ad nauseam, and to infinity and beyond.

Why? Why does my brain hate me?

And why does perfection matter anyway?

Because maybe – just maybe – if I reach that perfect state, the place where I’m finally all the things I want to be, and doing all the things I want to do, then maybe I won’t be in pain anymore.

  • Become a (well-liked) published Author. ✔
  • Be an awesome wife, mother, sister, daughter, friend, employee. ✔
  • Do yoga 3 times a week. Walk 60 minutes daily. Take a 2-hour hike every Saturday. ✔
  • Eat only (non-nightshade) vegetables and protein. ✔
  • Fit into my size 8 skinny jeans. ✔
  • Have perfect hair and glowing skin. ✔
  • Be the life of the party and a fountain of wisdom. ✔
  • Drink 8 – 10 glasses of water daily. ✔
  • Keep a spotless kitchen. ✔
  • Ride my horse through the Montana wilderness to rescue lost calves; my Stetson pulled low, my cowboy boots perfectly (there’s that p-word again) distressed. (I don’t even know how to ride a horse…but whatever.) ✔

The point is, my brain (not even on drugs) is telling me on repeat, that unless I’m all of the above, and then some, the pain I suffer from is my own damn fault.

How crazy is that?

Because I ate bread – it’s my fault my lower back hurts. Because I didn’t force myself to run an eight-minute mile after working all day – it’s my fault my hip joints are painfully locking and popping. Because there are crumbs on my kitchen floor – it’s my fault my brain fog is so bad I showed up for a 6:00 yoga class at 7:30 (true story).

Last night, I was talking about this blog with my doctor seester, Diane LaChapelle, who is an actual chronic pain expert with all the fancy letters after her name to prove it. She shared with me an explanation for some of my brain’s excessively critical ramblings.

It’s called the just-world hypothesis. Parsed down to non-scientify lingo, the just-world hypothesis is a general belief that life is fair, and people get what they deserve.

Good begets good. And if you’re bad…well, you’re fucked.

Therefore, if life is fair, and I am good (or in my case substitute good for perfect), then I deserve a pain-free existence. Right? And since I’m not pain-free, and haven’t been for years, it must mean I’m imperfect or a bad person.

A very, VERY bad person, going by my pain levels.

Seriously, life can be mentally hard when you blame yourself for things you have no control over. I have Fibromyalgia. The having of the disease is not my fault. Also true for Ankylosing Spondylitis. These conditions are a combination of the genetics I inherited from my parents.

GENETICS – that’s a whole other blog, right there!

The widespread chronic pain produced by these diseases? Not something I earned through bad behavior or my failure to reach my perfect state.

Fundamentally, I already knew this, but hellooooo, crazy bitch brain talkin’.

So here’s the deal. As I bumble along my wellness journey, I’m working towards changing my inner monologue. The goal? Finding my personal balance. That sweet spot between good and bad. Perfect and perfectly imperfect.

It exists. I just gotta find it for myself. And you gotta find it for yourself. Cause we’re not the same. My perfectly imperfect won’t be, and shouldn’t be, your perfectly imperfect.

Doesn’t mean we can’t share notes and experiences along the way. Doesn’t mean we can’t laugh and cry and curse together over spilled wine and dropped eggs. Doesn’t mean we shouldn’t hold each other up when our pain levels try to drag us down.

I’m a work in progress. Always have been. And, I hope to God, always will be. I’m still learning how to live with my chronic pain. I’m still changing my views on what’s the best way to achieve my personal goals. I’m still striving to find my balance.

It takes time. A lifetime, really. But I’m hopeful that with a little extra self-awareness and acceptance of things I have no control over, keeping an even keel won’t be so damn hard.

Although, if I open a bottle of beer, you can safely bet money, I’m having more than a single.

If you have any tips and tricks for finding your balance, drop them in the comments. I’d love to know more about your challenges and successes.

Until the next blog – peace out pain sufferers.

Perfection Versus Chronic Pain
Cheers!

Current pain level 6/10.

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Reverse Stereotypes and Cautious Optimism

16 Comments / Living With Chronic Pain / /

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 / /

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 / /

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 / /

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.

Traveling with Chronic Pain

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 / /

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?

Ankylosing Fucking Spondylitis

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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