First blog post

This is the post excerpt.


Welcome to my website! My name is Monique, A.K.A. “SpoonieWriter.”

I am a writer, chronic illness warrior, vampineur (migraine-induced vampire), avid reader, and above all, a dedicated mother.


Failed Back Surgery Syndrome, or Arachnoiditis?

Failed Back Surgery Syndrome, or FBSS, is vague term often used to describe patients who have not had successful results with back surgery. Or, if you’re like me, more than one unsuccessful surgery. (Details here, if you’re interested).

About a year ago, my MRI showed indications of a rare, incurable condition called Arachnoiditis. The ER doctor didn’t mention it to me at the time, and if I hadn’t brought a copy of the MRI results to my primary doc, I wouldn’t know I have it.

With so many other things going on in my life (won’t bore you with the details), I put the semi-diagnosis of arachnoiditis on the back burner. A few months ago, that simmering pot boiled over, and I was back in the ER. This time around, the doctor DID mention that I have a “clumping of nerves” and what signs to watch out for: Incontinence (bowel or bladder), Sexual Dysfunction, Paralysis, and/or a significant increase in numbness and pain.

If you aren’t familiar with arachnoiditis, and most aren’t since it’s such a rare condition, here is a synopsis:

Arachnoiditis, a widely misunderstood and underreported condition, can result from routine medical procedures and leave patients permanently incapacitated. Arachnoiditis is a neuropathic malady that affects the arachnoid layer of the meninges, not unlike Multiple Sclerosis, though MS is an autoimmune attack on myelin.

A more severe type of arachnoiditis is adhesive arachnoiditis.  Adhesive arachnoiditis, sometimes listed as “nerve clumping,” results in scarring and adhesions within the meninges.  When the nerve rootlets within the thecal sac are compressed, it can cause nerves to adhere to one another.  While described as a rare condition, there is no clear tracking method for this disease and, subsequently, many cases go undiagnosed. Since many doctors are not familiar with this condition, it may be mistaken for other conditions such as disc tears, cauda equina syndrome, failed back surgery syndrome, or multiple sclerosis.

Pain is the primary symptom of arachnoiditis.  Other symptoms include urinary and bowel dysfunction, sexual dysfunction, numbness, tingling, paralysis, headaches, fatigue, and extremity pain and weakness.  Since there is no consistent pattern of symptoms for this painful disorder, obtaining a correct diagnosis maybe difficult. 

Treatment of arachnoiditis is focused on pain reduction.  Spinal procedures (epidural injections, intrathecal injections, and surgery) may cause or worsen this condition so they are typically avoided.  Medical management is often limited to protracted use of opiates, antidepressants, steroids, and other treatments intended to minimize pain. Since the degree of symptoms vary in severity, some patients with arachnoiditis live relatively normal lives and can be managed with medical care, chiropractic adjustments, talk therapy, and physical therapy.  While none of these treatments claim to cure or even help every case of arachnoiditis, any treatment that is safe and may control the symptoms should be considered.


Most cases of arachnoiditis are attributed to iatrogenic causes.  The chemicals used in spinal injections are the leading iatrogenic cause of this condition.  The trauma of past lumbar punctures, spinal surgery, and injury can also cause arachnoiditis. The long-term effects of spinal stenosis, and disc degeneration has also been cited to cause arachnoiditis.

Infection is another cause of arachnoiditis.  Meningitis (viral, bacterial, or fungal) can result in arachnoiditis.  

Radiographic findings

Magnetic resonance images can reveal characteristic findings of arachnoiditis.  On an MRI, compression or adhesion of nerve rootlets of the cauda equina may be visualized. The nerve rootlets of cauda equina will frequently be clumped in the anterior portion of the thecal sac in patients with adhesive arachnoiditis rather than in their normal location which is more posterior.

So where does this leave me and everyone else with this excruciating disorder?

My neurologist said the only thing a person can do for arachnoiditis is “manage” the pain. He mentioned steroid injections (which, as seen above, many believe can CAUSE this condition), pain medicine (zombify’s me too much to take care of my severely autistic adult child), or a Spinal Cord Stimulator that my insurance only covers 80% of after I pay the $5500 deductible.

Since I’m not interested in opioids, my only options seem to be Lyrica, Amitriptyline, and CBD.

If you’ve been living with Arachnoiditis, please comment below. Any coping mechanisms you can recommend?

Are there any treatments you’ve found effective?

*I’m not an alarmist, but if you’ve been diagnosed with FBSS and NOT anachroiditis, keep a sharp eye on your imaging reports for words like: “clumping,” “adhesion,” and “cauda equina.” A diagnosis may not lead to a cure, but it can give you peace of mind knowing that your continued back, leg, and shocking nerve pains and spasms aren’t all in your head or because fibromyalgia changes how you perceive pain. *



Why “Good” Pain Days Aren’t Always So Good…

Greetings, my fellow spoonies and chronic pain warriors.

I’d kindly wish you a “good pain day,” but as a fellow spoonie, I know what an oxymoron that is.

Good pain days are to us spoonies what a winning hand of Texas Hold em’ is to a gambling addict; most often an omen of darker times to follow.

If childbirth is a “10” on a scale of 1-10, I can honestly say I average between a 6-8. On days when I feel my best–a 5 or 6–I tend to overdo things and feel even worse in the days to follow.

This is common to us spoonies. We appreciate our good days to the point of harming our already suffering bodies!

So what can we do to prevent backlash from our malfunctioning meatsuits on these days of tolerable pain and blahness?

Here are my tips:

  1. Keep Your Usual Limits in Mind: It’s tempting on these “good” days to cram everything we need to get done for the week (month, or year) into a single day, but anyone’s who’s tried it can tell you, it can lead to many days of misery. Sometimes more.
  2. Keep a Journal: I like to write my daily tasks in a day planner. Everything from: took a shower, made lunch, wrote 1000 words, watched YT video on marketing, folded towels, and made an important phone call is jotted down. On my better days, I read the things I’ve done on my cruddiest days and take it up a notch, but just a notch. If I managed to write 800 words on a day with a moderate migraine, mild nausea, and mild-to-moderate fibro aches and fatigue, I know I can write at LEAST 1200 words without completely wearing myself out on a 5-6 pain day. This ‘system’ can be applied to nearly anyone with chronic illness(es) who has a hobby or beloved distraction from pain. If you love to read, read a few chapters more–better yet, leave a review for books you’ve read! If you crochet and typically produce a pair of booties on a bad pain day, aim for a scarf on good pain days. Love TV on your worst pain days? Try starting a TV-related blog on one of your better days… The possibilities are endless.
  3. Learn Something New. There are days where even though my pain is more tolerable than usual, I just don’t have the oomph to work on my writing. On these days, I watch YT Vlogs about any and everything related to writing, editing, proofreading, building an author platform, and marketing I can get my hands on. I often do this on bad pain days, as well. If you aren’t a writer, maybe learning a new language in easily digestible lessons would interest you (free apps like Duolingo are invaluable). Hate the way your favorite TV show is being written this season? How about giving fan fiction a try? Want to take a class? Udemy and Skillshare have free & affordable classes up the ying-yang one nearly any subject you can imagine, not to mention all the free YT Videos.
  4. Bask in Some YOU Time. If a professional massage and spa day aren’t in your budget, there are TONS of DIY all-natural face and body scrubs videos on YT. If you’re able to get into a bath, a nice long soak in Epsom Salt can work wonders on achy muscles. Have you been wanting to watch a movie but are too worried your pain will distract you from the viewer experience? Watch it today!
  5. Spend Time Socializing. Are there friends and family you’ve been meaning to        catch up with? If talking on the phone or meeting for lunch is still too much on  your good days, sending a message on social media, an email, or text is a great way to check in with those you are usually too exhausted or feel too crappy to stay in touch with. This will remind them that you still care and are still around, and with any luck, remind you that you have a support system.

I’m grateful for these good days, as are most of us, but not using them wisely can strip these days and/or moments of their incomparable beauty and much-appreciated mercy.

As long as we keep what works for us in mind (as I try to do with these 5 bits of advice), there’s no need to trade a day of semi-normalcy for days upon days of agony and mind-numbing fatigue. Yes, we should be grateful for each and every moment of relief, but cheering too wildly and carelessly, tends to lead to longer-and-longer periods of recovery.

How do you manage YOUR “good” pain days?

Are you an overdoer?


Dear Body, We Need to Talk

I think I’ve given you the wrong idea somewhere along the line. As it turns out, I don’t like non-stop aches, pains, inflamed joints, and muscle spasms.

And nausea?… Oddly enough, I’m not a fan.

Again, if I’ve done anything to confuse you, please let me know.

And to show I don’t expect to be completely free of pain and all its energy-sucking side effects, I’m willing to negotiate.

  • If you agree to reduce my pain, light sensitivity, nausea, muscle spasms, zombie-like fatigue, and chronic migraines by just 50%, I promise I’ll feed you and treat you better.
  • Want more exercise? Help me get to the gym!
  • Want more sleep? Stop blasting me with leg and back pain, electric shocks, and spasms all damn night.
  • And if you want me to eat better, give me some tangible results when I DO. I’ll keep doing the work on my end, but this is supposed to be a team effort.

I don’t think these terms are unreasonable. The next step, however, is up to you, as I am a few quarts low of gumption, and my team spirit is running on fumes.


The Exhausted Warrior Inside You

Hell, thy name is Marketing!

I’m not a salesperson or a social media darling. I’m an introverted, asocial (not antisocial), INFJ, with multiple chronic illnesses. It’s not that I don’t want to be social, but constantly burying my pain under a smile so I don’t bore everyone around me, is just flat-out exhausting.

As a spoonie, my energy is precious and limited. When I’m not using it to take care of my kids, I’m using it to write.

So where is the energy it’s going to take to market and build an author platform coming from? I’ve joined Twitter and have “met” some inspiring writer’s and like-minded avid readers, but the idea of selling to them turns my stomach. Literally. I’m no stranger to doing things outside my comfort zone, but marketing truly ties me in knots.

I see other’s promoting their hard work and getting ignored. People looking for beta readers and critique partners only to hear crickets chirping. And if I’m being honest, I’m not looking forward to getting lost in the shuffle.

I like the idea of Content Marketing, and there are many indie authors who do it well, like @jennamoreci and @_KimChance, but I’m not as outgoing and comfortable in front of a camera as they are. These ladies are great at what they do, and I’ve found their YT videos invaluable, along with many other AuthorTubers’, but YT isn’t for me. I don’t even like having my picture taken.

I’ve started a spoonie writer-centric blog and have met some nice people along the way, but again, the idea of selling to them is just…ugh. And I certainly don’t want to sell to family.

If you’re in the same boat and perhaps have some marketing tips for someone like me (which I suspect there are many who hate marketing), please leave a comment. If I could afford to hire someone to market and handle the business end of writing for me, I would in a second. But like a lot of new and/or unpublished writers (even some established), money eludes me.

I keep hoping to find a really cool club for people to exchange their writing related services…a place where people who detest marketing or any other aspect of the process, can start a thread titled: “I will proofread your 80,000 word story in exchange for your help in marketing my book,” but have yet to find such a place. If you know of one, please comment with a link so I can check it out.

I plan to keep learning about marketing, hoping that the more I know, the more its fear-inducing hold on me will weaken, but I’d much rather put that energy into my writing!

What are your thoughts?

Do you like marketing?




5 Questions Spoonies Hate

Sorry this week’s post is late. What can I say? When a spoonie who feels like she has a never-ending flu bends (appropriately, mind you) to pick something up and tears her hip rotator and shifts her hips out of alignment, further aggravated by herniated discs, stenosis, fibro, arthritis, and trochanteric bursitis, you reallllly don’t want to hear from her anyway. 😀

Now, on with the show!

5 Questions/Statements Spoonies HATE

(and what to maybe ask/say instead)

  1. How are you doing?  On the surface, this commonly asked question seems harmless. But when you factor in the unspoken truth that not many who ask the question really care, and you could be asking said question to someone who feels like varying degrees of sh!t on any given day, the cuddly bunny rabbit of a question grows fangs. I know most people mean no harm when they ask someone how they’re doing, but there are some days the question, quite frankly, comes across like a fart in an elevator. So what do I ask instead? If you are just trying to be polite, something like, “Lovely weather we’re having,” though as clichéd as “how are you doing?” Shouldn’t come across as indelicate, however unintentional–unless someone has a fear of lovely weather or weather-related small talk, then I’d go with a simple head nod and polite smile.
  2. Don’t you get bored being home all day? Hmm…that’s a trick question. If the inquirer means boredom by its definition:
    Bored | Define Bored at Dictionary.com
    Bored definition, to weary by dullness, tedious repetition, unwelcome attentions, etc.
    Then YES I get bored. If the person asking means to imply that I do NOTHING all day just because I may spend that day at home, then I flip the question on them by replying, “Between raising two children, one non-verbal with severe autism, epilepsy, and ADHD, the other with depression and anxiety, being a wife, turtle-writing a fantasy novel, and driving back-and-forth across town visiting parents who take turns with stints in the ICU every-other-week, ON TOP of being chronically ill and in varying degrees of constant pain, then NO I don’t get bored. There aren’t enough hours in the day. Of course I say it a little nicer than this, but you get my point. 😉
    3.  How do you live with chronic migraines?   This question is usually followed by something like, “I’ve had a few migraines, and I couldn’t get off the bathroom floor,” which at its core, is a compliment to the strength it takes to live with chronic migraines/pain. BUT…I’ve found that most who ask this question do so with an incredulous tone to their voice, not so subtly implying that NO ONE could POSSIBLY live with such pain, and by consequence, some of it might be “in your head.” Umm, yeah…that’s where migraine headaches ARE. lol
    This one is tricky for me, though, because I don’t blame these people for not being able to truly get it unless they’ve lived it, and I wouldn’t wish that upon anyone. Okay, maybe Hitler…

    4. You don’t LOOK sick/ You look great: I have mixed feelings on this one, too. On one hand, it can be nice to hear that you look good, even when you feel like something the cat wiped its arse on. On the other, it can come across as a passive/aggressive way of saying, “You don’t look sick, so you must like the attention.” Or…”You don’t look sick, so you must be a hypochondriac.” As with all conversations, be mindful of your tone.

         5. Everyone gets “aches and pains” and feels tired:   The pain and fatigue that come with chronic illness(es) can be exhausting in a way that healthy people can’t understand. I’ve tried explaining it to healthy people and came up short.

All I can say is, remember the last time you had the flu. The deep aches and pains, crippling fatigue, nausea, lethargy, brain fog, etc.,? Now, imagine that flu lasting a decade instead of a week. Two decades…Longer. Our bodies are fighting against themselves daily, and on top of that, we probably didn’t get enough sleep. It’s really hard to sleep when you can’t find anything resembling a “comfortable” sleep position and  have a million things you weren’t able to get done and still need to be done, running though your mind.

There are MANY questions and statements like these made to Spoonies on a daily basis, but these are the 5 I, and the spoonies I’ve asked, get hit with the most.

Please share your thoughts and any you’d like to add to the list. 🙂






Embracing the Suck of Migraine-Induced Vampirism

Embracing the Suck of Migraine-Induced Vampirism

Good day, my fellow #vampineurs, #spoonies, #fibro warriors, and everyone else touched by the suck of chronic illness(es).

Life’s hard: Duh.

Life is even harder when you and/or your children/close loved ones are battling chronic illness: Double duh.

But instead of focusing on all the things chronic illness takes from its sufferers and their loved ones (and heaven knows the list is endless), I am choosing, today anyway, to focus on the PERKS of being chronically ill. Particularly, the perks of being a vampineur.

If your brows touched your hairline, middle finger jutted up, or your jaw gaped when you read the word “perks” you’re not alone. My own jaw gaped as I typed the cheerful word in the same sentence as chronic illnesses and migraine-induced vampirism, but I promise you I’m not crazy. At least not completely. 😉

Perk #1   I’m constantly told I look too young to have a 20 and 17 year old. I was even carded when I bought some alcohol last week for a marinade (I’m 38). Perhaps I owe this to having to avoid sunlight almost as much as the brave people battling porphyria or albinism.

Perk #2  Creativity. Pre-spoonie/migraine days, I used to dream–a lot. Vivid, often lucid dreams, many of which I still remember as clearly as real memories. Now, I rarely ever recall dreams. But…the sparks of creative brilliance (possibly insanity) that flash through my mind while in the midst of a migraine, are far more reliable and beneficial for the book I’m writing.

Perk #3  A Tougher Hide. Like most type-A, introverted Capricorns, I don’t wear my emotions on my sleeve. But my emotions run deep. In the past, this has prevented me from taking chances that might expose me to ridicule and public judgement. Being in constant, yet varying degrees of pain for over a decade and watching my children battle their chronic physical, developmental, and emotional conditions even longer, has changed that.

I’m still not a social butterfly, doubt I ever will be, but making connections with other people no longer makes me quake with fear or aggravates my IBS–I have my pain to thank for that.

If you can relate to any of this, or know someone who can, please comment and/or share your story and tips for keeping sane in an insane body living in in insane world. 🙂

I love to hear stories from other vampineurs and chronic illness warriors, so please comment and/or send me a link to one of your blogs.

You can also find me here:


Or: https://www.pinterest.com/moniquemargaux/

Twitter: @spoonieW