Dear humans,
Please forgive the clutter under the female’s desk. It’s very difficult for her to get under there to clean. Earlier today, we brought up health problems, life, the universe, and generally everything. Someone commented about how the female’s symptoms were in line with fibromyalgia.
This is ridiculously common. We can’t shake a stick over how many times people automatically assume pain, anxiety, and depression somehow equate to suffering from fibromyalgia.
We’ve, frankly, have had it with this stance, and we’re about to burn it to the ground with some science.
Fibromyalgia has become a dumping ground of ignorance, which is very bad for those who suffer from it. It discounts the actual syndrome. Someone who suffers from chronic pain does not necessarily have fibromyalgia. In fact, most chronic pain sufferers do not have it, and they’re more likely to be inflicted with cancer.
Yeah. That’s a pretty shitty reality.
Fibromyalgia isn’t really understood all that well yet, it’s horrifically difficult to treat, and often has mysterious underlying causes. It prevents diagnosis of other problems, too.
Fibromyalgia sucks. Nobody wants that diagnosis. Patient abandonment is a huge problem with fibromyalgia because it is so difficult to treat successfully. Doctors just don’t want to bother.
That’s terrible.
For the sake of diagnosis, never suggest fibromyalgia first. Fibromyalgia should be the last thing attempted for diagnosis, especially in the US health care system due to the high rate of patient abandonment.
It gets worse.
Fibromyalgia is not the king of chronic pain, it isn’t even the most predominant cause of chronic pain, and it’s time to sit down and dispel some myths about chronic pain, invisible illnesses, and mental illnesses.
Chronic pain is a catch all phrase for ‘I hurt all the damned time for undisclosed reasons.’ When someone says they suffer from chronic pain, one of the worst things you can do is automatically suggest that they suffer from fibromyalgia. Please stop it. Stop discounting chronic pain. Stop assuming people have a really rare syndrome and adding to the panic and worry of being chronically ill. By going “Fibromyalgia!” you’re discounting the person’s suffering. Seriously. You are. You’re also discounting and belittling those who do suffer from fibromyalgia while you’re at it.
You may not mean to, but you are.
Please, please stop. If you don’t know what sort of chronic pain someone is suffering from, ask them first.
So many chronic pain patients have undergone lengthy diagnosis processes and know exactly what is wrong with them.
Here’s the female’s list:
1: Scarlet fever. She had this as a child, grade 5. It has damaged her heart and circulation system. As such, things like exercise are brutally difficult and often painful.
There is no cure. She can exercise, but it is a slow, painful, and brutal affair. Improvement happens at roughly a quarter of the pace of healthy humans who do not suffer from damage from a severe disease.
But let us repeat something: there. is. no. cure.
This is but one facet of the chronic pain story.
2: severe tendonitis.
This does have a cure, but it must wait until the female is fully vaccinated against COVID. For now, it is daily and relentless chronic pain. Typing is fairly low on the pain scale, but it still hurts. It always hurts. It always hurts.
That is the nature of chronic pain.
3: defective spine / neck.
This one is the source of migraines and many, many chronic pain problems.
There is no cure. The location of the problem is inoperable, and the PT and other treatments basically ‘keep it tolerable.’ That’s the best the female can hope for.
For the pain to be tolerable.
4: an elevated rib.
This one is mostly harmless, but it can flare can create pain sources. It’s one of those oddballed additions to the chronic pain chart.
Unfortunately, it can work in conjunction with the spinal defect. When it does, it equals migraines and pain, pain, pain.
Chronic pain is simply the state of being in pain all the damned time. There is always a cause for the pain. Always.
But you need to ask, not assume.
Chronic pain is common.
Fibromyalgia is rare.
5: busted knees from an accident.
The female is clumsy at times. The female dropped off a flight of stairs directly onto her knee cap. Doo doo doooo doo doo dooo do doooo Pop! Goes the Kneeeecap!
Unfortunately, thanks to straining the other knee bearing all the weight for months, the other knee cap is also pooched.
The female did not ‘need’ surgery. But the knees are pooched.
Yeah. That. One day, the female will need a single or double knee replacement. She is too young. Exercise can kinda sort of help, but the exercise fucking hurts.
6: Anxiety and depression.
These are not the cause of chronic pain, but the chronic pain definitely feeds both of them, and when you’re already beaten down because of relentless pain every day, this is a terrible, horrible combination.
Worse, people with chronic pain can develop anxiety and depression because being in pain all of the fucking time really fucking sucks.
The female’s fucking amazeball doctor has made the anxiety and depression bearable. The female’s doctor is an amazing human who tries hard to find solutions for difficult problems.
Let’s showcase a day in the life of the female:
1: The Time of Sleeping becoming the Time of Waking.
On the chronic pain front, the mornings are often the worst. Overnight, everything that’s hurt, which is elbows, knees, neck, and back… tend to hurt more because they’ve stiffened up overnight. The female is a quiet, still sleeper. This means that everything stays in one position often. Upon waking, everything that was still really protests about moving.
Frankly, it’s horrible. On a good day, it takes one try for the female to lurch out of bed and limp to the bathroom before going in search of the painkillers.
Yes, with rare exception, the female’s day starts with painkillers, to address the tendonitis, the knees, and the other oh holy fuck why does this hurt so much pains associated with going from not moving to moving.
2: Ahh, that’s a little better. The Time of Medications.
In reality, the morning dose of painkillers can get the female through the day okay. She puts on the braces, or she adjusts them if it was bad enough she wore them to bed, and she settles in to go to work. The pain has gone down from ‘ready to cry’ levels to ‘eh, it’s fine, everything’s on fire, but she’s got this!’
There are days where in reality, that answer is actually “She can’t cope with this anymore, why is she even here? What did she do to deserve this?”
That’s when the anxiety/depression bite extra hard, humans. When she’s been beaten down already.
She has a rattly pill that helps with this that she takes every day. It does help a lot with the Beast.
She writes to escape reality just as much as you read to escape reality. Working gives the female a purpose and a reason to endure.
But we will not lie to you. This is exhausting. Chronic pain is exhausting. Chronic pain is relentless, it is ugly, it is ever present, and it colors every aspect of the female’s life.
Another reality is this: Princess and I are therapy animals. That is our purpose in our household. We are eased into being support animals for the female when the pain is bad and she needs a ground. We serve time on her lap and purr for her, because this helps.
But at the core, we’re therapy animals. We don’t wear vests and we don’t leave home, but in the household, that is how we function. We are taught to support, and I was picked because of my generally loving nature, which is a needed trait in a cat that needs to serve in a support role.
The female likes dogs, but a dog is out of the question. The dog cannot walk itself, and the chronic pain is real, and the male cannot always walk a dog. Therapy cats are a better choice for the household than therapy dogs.
But therapy pooches are good, too.
(But seriously, a 685 square apartment isn’t really a good choice for a dog. At all. Where us felines are happy to take up whatever space is available. On one of our four hammocks or two cat trees… or on a lap, or at the female’s feet… or in bed, warming the blankets.)
When the humans came to the United States and had to send two of their other cats to live with the female’s mother, Tia the Majestic and Princess were selected to go California for one reason alone:
They were the therapy cats. Smoke and Lily were very loved pets, but Tia and Princess served as the therapy animals.
(No, there was literally no option to be able to take Smoke and Lily to California. It was impossible. The law would not allow, and because we immigrated to California from Canada, we had zero flexibility in terms of doing things like sneaking pets across the border. If you can’t say anything nice, don’t say anything at all.)
It boils down to this:
Chronic pain is hard. And chronic pain is so often discounted by just about everyone, because it’s really hard for those who don’t suffer from it to understand the emotional wear and tear associated with hurting all of the time.
3: It is the Time of Sleeping… maybe if she takes a dose of the pain killers, it will keep the Time of Waking from hurting as bad–or at least help her fall asleep. Mostly help her fall asleep.
She is used to the Time of Waking being made of pain.
For the record, it usually takes approximately an hour for the female to be able to get out of bed. She has a routine. It involves making sure the knees and elbows get as warm as possible before trying any significant movement. The warmth helps keep them from being as painful.
Then she makes sure not to move her neck much. The neck is getting better, but it’s still not good.
This is life, every day. Rarely, the chronic pain is like a one.
On those days, she cries. Mostly from relief, but she cries all the same. Pain free days–or days where it’s only a one, two, or a three? These are special.
Her average day closer to a four or a five.
Yeah. Pain sucks, and so does COVID, because if not for COVID, she could get back to pain days of 1-3 fairly consistently, but it is not the worth the risk of contracting COVID getting help for some of the problems.
And yes, that is on her doctor’s advice. And for the record, the female will fucking fight you if you say anything bad about her doctor.
The female’s doctor is fucking amazing.
The female’s doctor removed an entire source of chronic pain and protected that precious medication and found a solution to the side effect that might have stopped the working treatments. Without the female’s fucking amazing doctor, this would be worse.
Yeah. That’s not fun.
Moving on.
Fibromyalgia is a type of chronic pain, and it sucks. It often is triggered by foods, and your nervous system freaks the fuck out and triggers pain here pain there and pain everywhere.
This is only one small fraction of chronic pain. (Note: this is not a comprehensive explanation of fibromyalgia. If you want to learn more, hit google and use a reputable site like the mayo clinic.)
It is estimated that 2% of the US population suffers from fibroymalgia.
Now, let’s discuss another source of chronic pain: cancer.
It is estimated 38% of those in the United States will, at some point, suffer from some form of cancer. Cancer causes chronic pain.
Now, take a very close look at those numbers. Let’s break it down. There are 100 people. 2 of them have fibromyalgia. 38 of them will, at one point, suffer from chronic pain stemming from cancer and cancer treatments. (And fortunately, if their treatments are successful, the chronic pain should go away.)
The female’s father died from cancer. The chronic pain associated with cancer is no fucking joke. It’s a horrible way to go out.
Back to our cookies. At current, it is estimated that 20% of the United States population suffers from chronic pain. Only 2% of those people are inflicted with fibromyalgia.
Fibromyalgia is not common, and it should not be the frontline offense in keyboard warriors attempting to diagnose others.
Please stop it.
No, most chronic pain sufferers do not have fibromyalgia.
Some have endometriosis. Some have cancer. Some have broken bones leading to nerve damage. Some, like the female, have spinal deformities and injuries. Some have other diseases, including scarlet fever or COVID. Some have arthritis. Some have multiple sclerosis.
Most do not have fibromyalgia.
Learn to be kind to those with chronic pain.
One day, through no fault of yours, it could be you. And trust us when we say the last thing a chronic pain sufferer wants is pity.
It’s understanding and validation the pain is real.
The female’s pain is real.
So is the cancer patients, those who suffer from arthritis, chronic kidney stones, and a boatload of other conditions.
Just because you can’t see it doesn’t mean someone isn’t suffering.
And, chronic pain sufferers?
We’re told, over and over, to not burden or exhaust others with our suffering. We’re told we should stay quiet.
We wouldn’t want to make anyone uncomfortable.
How dare we make anyone uncomfortable.
The female writes books because it helps her get through each day.
She publishes them hoping they help others get through their day, too.
Do not ask what the female would endure if she had to actually leave home to work. If she had to, she would… but it would hurt more than it already does.
And that is why she has so much desperation and determination to succeed, so she can continue living a life where she can cope with the chronic pain and be productive. For her, being productive is a victory. It’s a very important victory.
It’s the kind of victory that helps her get through the dark days.
“I can do this, even though it hurts.”
“I can do this.”
“I can.”
Then, most importantly… “Look. I did this even though it hurt.”
Welcome to life with chronic pain.
End note: When someone tells you they suffer from chronic pain, one of the best gifts you can give them is your understanding… even when you can’t understand it.
And for fuck’s sake, stop asking if the person has fibromyalgia. Ask for the cause if you need to be nosy. Otherwise, ask how you can help.
Because really, sometimes, the one thing someone suffering from chronic pain really needs is someone to pick up the goddamned groceries because it hurts so damned much or to drive them somewhere because holding the steering wheel may as well be like dumping your hands in acid.
(Seriously. Ask if you can help… and if they say they have a need, go and help them.)
Validate, don’t invalidate.
Believe, don’t judge.
But most of all, be kind.
I wish more people understood about chronic pain… my sister has chronic pain that makes her unable to walk a lot, but people are aholes, and don’t understand it so they say she’s faking it. I’m so very sorry you have to go through all of this. I hope you can get back down to those lower pain days sometime soon.
Yes. I have trouble walking. Some days, I can fake it and look normal. Others, I walk with a very noticeable limp. I cannot actually jog. I try, and my knees just… nah. That ain’t happening. Cute thought, though.
There have been days I have not made it out of bed without having to ask the husband to find a knee brace because my knee isn’t stable enough to walk. Those days suck. Now the knee brace is within reach if that happens, just to spare him the trouble…
Hi RJ! Hugs for you and what you have to endure. My sister does have fibromyalgia and I have back/neck/knees and hips issues. For me, chiropractic and massage helps keep me mobile. A good massage therapist who works with the modality that your body needs is a life saver. I can personally recommend Cranial Sacral body work. And it takes going to many massage therapist before finding the right one. As for exercise, I have discovered a mobility devise and can’t wait until I can use it. It is a Alinker. https://www.thealinker.com/ It is a type of a walking bike that supports you so you can move. Not many people know about them, so I am sharing in case it may be something you can use. Hugs!
Thank you for writing books that have helped me get through times of sorrow, stress, and boredom as well as pretty good days when I read them for fun. Hope you get vaccinated soon and can move forward on health issues. Bless you, your cats, and your doctor.
Thank you for this post. I teared up, because I have chronic pain, and I am so, SO sick of Fibromyalgia being tossed around. I have Ehlers Danlos Syndrome, which is a weird one and miserable all on its own, but my pain is primarily JOINT pain. When I have problems I have to remind MY OWN DOCTORS that there IS an explanation for the weird and its NOT Fibromyalgia. I’m so tired of smiling politely and saying, no, it’s just EDS, yes it’s weird, but it’s just EDS being EDS.
On top of that there is a lot of stigma from people assuming Fibromyalgia is ‘fake’ because it’s been thrown at people as a ‘we don’t actually know’ diagnosis. So it has inconsistent descriptions and symptoms that give cannon fodder to people who insist chronic pain is Just Making It Up for Pain Meds/SSDI. It’s bad for those who DO have it and need care, it’s bad for those with other chronic pain issues and need help, and it’s preventing doctors from actually hearing what a patient is saying.
/rant
This is exactly it. Exactly it. We need compassion, understanding, and validation. We don’t need everyone who has chronic pain being told “But fibromyalgia!”
There is a snowball’s chance in hell during summer at the lava faire that I have fibromyalgia, yet people keep insisting… but fibromyalgia.
No. That’s not how this works.
This exchange was both impressive and unnecessary.
I appreciate your struggle to do something you love, entertain many, and manage an economically feasable career. It’s Damn hard.
My comment comes from the struggle to do anything meaningful, not offhandefly random or 1st line.
What the word “fibromyalgia” can achieve for anyone suffering constant life interruption is off label lyrica. “For diabetic neuropathy” but someone after 10+ years of inexplicable pain fatigue and general life suckage– medication resistant depression; chest pain that’s not cardiac; arm and wrist pain that’s not arthritis, bursitis, carpal, or any discernable nerve damage; anxiety about being employable again; stomach cramps and gut problems that aren’t ulcers, cancer, colitis, ibs-c or ibs-d; migraines that aren’t hormonal, blood pressure or brain injury, etc etc ad nauseum. A chance however remote at a bit of normality.
When you have chronic widespread pain from no injury, (having ruled out lupus, Lyme, MS , Parkinson, cancer, organ failure, and rheumatoid arthritis,) then they can say fibro and offer a treatment, no cure, but something might help a little bit of everything. This I was suggesting with fibro, from experience.
You can ask, “can any of this cluster I’m experiencing be called fibromyalgia?” Whereas you can’t just “ask you doctor if Lyrica is right for you,”
Then, no guarantees, but when anything is worth trying– something that may help fatigue. May help the cycle of anxiety-depression. May calm unpredictable churning in guts. May help the spinning preceding a migraine. May keep that migraine down to a manageable thud. May help all the inflammation that feels liken deep tissue bruising and tendons being tugged at with a crochet hook (unreasonable when the only exertion is blinking and breathe). May even help get restorative healing sleep. The chance, even remote, is worth a prescription copay to claim some normality.
this uncharacteristic rant is simply because I cannot abide denomination of clueless wannabe guru like Gwyneth paltrow: oh just try fasting, coffee enemas, obscenely expensive miracle herb (harvested by blind Buddhist monks once a year on the vernal equinox), and of course yoga.
I further suspect that neither of us had spoons for this, but feeling attacked, belittled, or intelligence offended, one sometimes must respond to restore order in the mind and calm the spirit. Even when one is fully aware that disregard and scoffing silence is the better response than venomous spewing.
A fan despite this regrettable episode,
~LD
I’m sorry you feel that way, but frankly… I stand by my comments, and I’m tired of people expecting me to be quiet and ‘trying to help me by suggesting fibromyalgia.’
This is common.
I am tired of people being frustrated with me because I suffer from chronic pain.
I am tired of people assuming they can diagnose me because they have fibromyalgia or they know someone who has it.
It was not unnecessary, however, just because you don’t approve of it.
Read the post carefully, because those drugs should only be used by those who HAVE fibromyalgia, not for every damned person who has chronic pain.
Most people who have chronic pain do NOT have fibromyalgia, but the first thing people just jump to willy nilly is fibromyalgia.
Saying “Fibromyalgia” hurts far more than it helps. For those who have it? It is a critical diagnosis.
For everyone else… they need a proper diagnosis.
Not just some stranger going “Fibromyalgia!”
And yes, you hurt and offended me with your initial comment on the previous post because of your ignorance over my condition.
You just assumed.
So no, it was NOT unnecessary. It was very necessary, because you have no right to be frustrated with my suffering.
Also, as a by the way, because you CANNOT abide by clueless wannabe gurus… you should not be tossing around diagnosis. At all. Because you are doing the same exact thing as them.
That’s why it was so hurtful and offensive when you did that to me. You didn’t even ask if I had any diagnosis. You just presumed. You picked a fad diagnosis, and YES, people are being misdiagnosed with fibro BECAUSE of this trend of going “but is it Fibro?” It’s a very convenient way for doctors to get out of giving patients a CORRECT diagnosis.
So… no. Just no.
And if you cease being a fan, that is fine, but you will be held accountable for what you say on my blog, especially when it’s a hurtful statement that can cause a great deal of harm.
Because doctors use fibro as an excuse for those who DO not have it and often fail to treat those who DO.
Fibro is RARE. Chronic pain is not.
My mom was misdiagnosed with fibromyalgia for years. She spent years taking medications that didn’t help her and teetering on the edge of an opioid addiction because she was given a diagnosis that was incorrect by a doctor who just kinda picked the one that seemed to fit without doing proper due process. It is HARMFUL to try and diagnose people when you don’t have the full picture when you’re a doctor, so imagine being a non-doctor and trying to suggest a diagnosis without stopping to think for half a second “do I have a medical degree and the credentials to do more than ask what diagnosis, if any, do you have?”
I have chronic pain, too. I’ve had so many people with a distant relation who also had chronic pain that turned out to be fibromyalgia tell me that it sounds like I have fibromyalgia. Not “is that one of the conditions you’ve looked at?” They say “oh, this sounds like fibromyalgia to me.”
I don’t fit the profile, for the record, and Google MDs need to get out of the backseat of the diagnosis van and a consideration for others pill.
I feel compelled to say, as a medical professional— with a DEA number, and a license to, you know, practice medicine, and everything— that I would never dream of reading someone’s blog and offering a diagnosis.
Ever.
I would absolutely never, *never* recommend a medication or course of treatment for someone to take to their physician to ask for.
It’s as reprehensible as some psychologist or psychiatrist who, having never actually clinically evaluated Donald Trump, offers a diagnosis of his mental state based on his press conferences. (Yes, I picked him on purpose. No, I don’t like or support him.)
Not only do your actions not say, “I care and am concerned about you,” it says, “I know what is going on with you better than you do, and I have stopped listening to what you are actually saying.”
It conveys a lack of listening to the blogger’s actual boundaries, and promotes more of the same from other individuals.
For anyone else thinking of offering advice in this vein? RJ has repeatedly and clearly said: PLEASE DON’T.
Don’t.
Even if you are a physician, it’s just plain bad medicine.
I know all about chronic pain, and people looking at you and since they can’t see the problem wonder why you have a handicap placard. I have tendinitis, arthritis, bursitis, and a hip that pops in and out of place.
I don’t have a handicap placard… I don’t know if I’d realistically qualify because I’m able to move reliably enough I CAN handle the walk across the parking lot. But now that we own Dipshit… let’s just say I definitely need the hand grabby thingie to get in and out. Ironically, he’s actually easier to get in and out of because it’s like taking a step up and then sitting on something suddenly at butt level. Actually MUCH kinder than getting into a regular car. I just have to be very careful sliding out of the truck!
I’ve learned a long time ago when my dad had cancer that you take one day at a time, and still do that. Then last year ended up with a chip fracture in my ankle and that won’t completely heal so my legs are all messed up but I keep pushing myself and I’m standing alot at work. I’m a cashier at Walmart.
My knees just gave me a double dose of sympathy pain. I could not do that, and I admire your tenacity. (I cannot stand still or in one place for very long. Maybe thirty minutes at most? After that, the lack of motion makes my knees really, really horrible to the point of collapse.) I can walk around for hours, (it hurts like hell) but I can’t stay in one spot long at all!
Itsvnot easy and I try to move around to scan the heavy stuff since I can’t lift to many cases of pop or beer, since I also have pleurisy. And I have an ada for my cane, chair and extra break if I need it. I try not to use my chair that much.
I really don’t understand the US. In Europe, the cashiers are seated all of the time, and it’s MUCH better for their health! And they can do their jobs just fine. The chairs spin so they can help bag as needed. Without having to stand and hurt themselves.
The US needs to adopt this. People do NOT need to be standing!
I like the concept of the swiveling chairs, that would be a big help, instead of trying to move your upper body to bag, that’s why I try not to use my chair.
Just as an FYI, I removed the portion about politics; this is not the time nor the place for any form of politics. My readers are all types of people, and I want the website to stay a safe place for everybody.
But yes, I think you’d love the chairs I’ve seen in Europe. They look really comfortable, and the stores are designed with the health of their staff obviously in mind.
Sorry about the politics, I should have just said that the prices of medicines have gone up again to outrageous prices. And with the opioid crisis here, you can’t get good pain medication that will actually work.
Yes. The cost of health care in general in the United States is a huge problem. My husband’s MRI should not have costed $30,000.
That’s alot for an MRI, I don’t have insurance so it’s hard. My husband is a veteran so he goes to the VA and with all the medications he’s on it helps, he is diabetic and has high blood pressure and he has no feeling in his left foot, he is trying to get used to using a walker
If you think that’s bad… a few years ago, he had one at the same place. They charged $54,000.
I’m trying not to think about if or what insurance is going to cover of the bill right now. We don’t have any definitive billing data yet.
The husband’s hospitalization and release was over a month ago, and we still don’t have billing information…
Hopefully the insurance pays alot of it for you. Hopefully you husband is doing better. We are waiting for an EMG for my husband to see his nerve pulses so we can get the right treatment.
Yeah. Mostly, I just want them to actually provide appropriate billing / billing information. Oy.
I believe my last MRI – at the Cleveland Clinic, one of the top rated hospitals in the country* was under $800 before insurance. FWIW. It wasn’t anything fancy – just a check on my cervical spine – but still.
* Whatever that means. Well, okay, I have a lot of friends who work their both on the clinical and research sides, and I respect the institution to pieces. But they do often chew their clinicians up and spit them out…
Yeah. This was at the Stanford Research Hospital specialty hospital for gastrointestinal care.
Thank you for explaining all of this. I had chronic pain for years until I got my hips replaced. Like your human, I didn’t have the option of letting it stop me. Because my partner also had chronic pain (from having her legs shattered in bicycle versus car accident, and later from cancer), and hers was even more debilitating, and I was her only caregiver until she passed away.
So I get it. I really do, and I wish I were in a position to be helpful. But all I can offer you is the knowledge that there is at least one other person who understands. ?
Thank you.
Your openness and courage has opened my mind to many things I have been ignorant or unmindful of. It makes me want to be as brave as you.
Writing is a gift. Your books are gifts I eagerly anticipate and appreciate. Waiting is no bad thing…anticipation sharpens the appetite and the appreciation, after all!
No one should be so rude as to criticise a gift giver! If they don’t like it, the recipient should at least have the grace to say thank you, in appreciation of the thought and effort that went into such a gift.
I say thank you, for the many hours of enjoyment and emotion your books have given me. I’ve had dark days and your books (and newsletters) are like glitterbombs in the dark, catching light and lingering unexpectedly, little specks of laughter as I remember a line or character, helping me re-focus on something positive.
I wish you ease and comfort in the near future…Karma has to pay her dues to you soon, right?
As a Chronic Pain sufferer as well as a Fibromyalgia sufferer, Thank You. If I hear somebody say “Oh, you just need to move around more” one more time I just might do something drastic.
Personally I think you’re doing great with 2 adults, 2 therapy kitties and a career in 685 sq ft. I’m single with 2 kitties and live in 650 sq ft. It’s not a lot of space.
Do what you need to do to be healthy. People can wait for the wonderful books. Ignore the crabby people. Some people aren’t happy unless they bitch.
Once again. Thank You.
Okay, chronic pain PLUS fibromyalgia is just in the That’s Really Not Fair!!!! category. Because that is REALLY not fair.
And FUCK that whole you just need to move around more thing. I’m doing it because I need to strengthen my heart so I don’t fall over dead, but it hurts SO much.
Exactly. It hurts a lot. You move and your brain says OWIE! I finally had to get a mobility scooter for distance over a block.
My Pain Clinic can be my best friend… The needles they wield however, are not. They can’t make it go away but they can reduce the pain a bit.
I totally get it.
By the way I LOVE your books. You displaced my former favorite author as my new favorite.
My chronic pain is much lighter than anything you describe and it feels relentless. I am amazed that someone can craft something so compelling as your novels with those levels of pain.
Anxiety is a BITCH, Depression is evil and lies to us and Cats are fantastic beasties – my little guy gets me through the darkness, although not without a look of disgust at tears. Which kinda makes me laugh and that helps. Sometimes.
Empathy.
thank you. For the books that you write, for the feelings that you share, for the willingness to point out that pain can still exist, even when it isn’t immediately evident to others. Your books have helped me thru many dark days, and I’ll continue to buy them, whether you put out 2 a year or 12.
A lot of days, I feel guilty I CAN’T keep producing so many a year, because I know that so many get an escape through them, and I value that so much. But slower production is so much better of an option than no production.
You’re welcome.
I just reread them. Plus I haven’t even started on the two “other you” books… so many books…
Thank you so much for this post. I have chronic pain and migraine since I was 6 years old and every day is a fight. And everyone has an opinion what I should do, even if they have no idea what I’m going through, and no one asked them. Thank you for putting in writing how hard it is. Your books help get me through the day, as do my four cats. I often feel guilty for being sick and that I can’t do everything I’m supposed to do and work as much as I should. And that’s mainly because over the years I was being told I would only pretend or that I was too lazy. And that hurt and so your post is really helpful. Thank your that your are writing these great books. I would wait however long it takes to read the next book.
I so appreciate your letter/post on chronic pain. I’ve lived it for years. I am one of those who does have fibromyalgia along with spinal stenosis, chronic bronchitis and migraines. I count myself blessed to have a day without a headache. Please know there is someone out there who totally gets your frustration with those who don’t. For years, I was told it was all in my head. It’s not. It’s real. It hurts. Thank you for sharing and having the words to express those thoughts. I don’t write but I do paint and read (a lot). You are not alone. I admire what you do. All I can do to support you is pray and I will. (I’m to far away to help in person.)
My late mother had migraines and rheumatoid arthritis (for those who don’t know, RA is an autoimmune disease that attacks connective issue – osteoarthritis is when the cartilege between the joints wears away). My father has compressed disks in the lumbar region of his spine + osteoarthritis in his spine, shoulders and hands. It’s hard to watch others suffer, especially since you can’t fix the problem and you don’t fully comprehend the scope of the pain… all you can do is your poor best (like putting on the passenger seat heaters for Dad).
Sounds like the female has hit the booby prize jackpot for chronic pain 🙁 I just hope that the knees can be replaced sooner rather than later, so that the pain levels can decrease somewhat. I can understand that surgery isn’t possible for the spine/neck defect, but would it be possible for the elevated rib? If so, it might be possible to deal with it at the same time as the knees…?
Hugs, to every single one of you (if it doesn’t make it hurt more!). I have no other words in me that would go anywhere close to describing how I feel after reading the blog and subsequent comments.
Thankyou for this. My 21 year old daughter has had chronic pain since she was 15. She has hypermobile joints , is 1 symptom away from a EDS diagnosis (no heart problems, blessing and curse), terrible menstrual cycles (can’t find a BC pill that helps). On top of all that she’s a klutz (apple from my tree on that!) . She does not take prescription pain meds yet, but has had procedures. She goes to college , (2 states and 4 hours away ), lives her life the best she can (found a EMT/parametic boyfriend)I don’t know how she does it, but she just goes on. We have been very lucky to have good insurance coverage, have every test, see specialists without the financial worries. That’s going to end for her soon and that worries me. I hate that this is her normal, but I’m proud of how she handles her life. Thank you for all your great books, and kisses to your great cats.
I understand your frustration. I have a friend with RA and migraines and my mom has cancer. Each day is different and you have different levels of abilities. I will need to have my knees replaced soon, so sometimes they hurt so much I don’t want to move. People have been increasingly using Dr. Google to self diagnose or diagnose other people. I wish everyone would try to be nicer and not assume. Because we all know what happens when one assumes…..
My sister has chronic pain and uses cbd oil applied topically for pain relief and uses edibles for internal relief. I don’t know California’s rules on these, but if you can get it, hopefully it will help. May you have a pain free day.
I – hm, enjoyed might not be quite the right word. Appreciated, maybe? – this post.
I had a few physicians try to label me with fibromyalgia. I successfully fought the diagnosis, but it was a battle, and the research I did to argue that fibromyalgia is a pretty bad diagnosis considering that I had symptoms consistent with a spine injury at C5-C6 played into the biomechanics focus in my eventual doctorate. Eventually, a few reinjuries later (apparently when I get into a car, it becomes invisible to other people, and I can be sitting at a red light and people will drive large vehicles into…) I ended up with fusion, which helped a lot and saved the nerves to my arms, but also means I get migraines now. (Mostly controlled.)
Between the research (now my day job, after all), a lot of trial and error, and some luck, I’ve mostly managed to navigate all the various things. Though that’s also meant that occasionally I’ve been held up as an example to other people with chronic pain, with someone saying “Just be more like her!” …and I’m all “No, shut up, I will rearrange your face -” (I also teach martial arts, so while I’m not generally violent, people do take the threat seriously) “- that’s not how it works!!!”
And it’s complicated. I have pretty benign hypermobility – I also have excellent muscle tone. I figure it’s no accident I’m a martial artist and my sister is an aerialist. We need to stay strong, but if we do, we can do amazing things. But I have a genetic consult coming up because of the random non impact based bruising. (I mean, aortic dissection would really ruin my day.) I’d figured out how to deal with the fatigue post parvovirus (whee, more grad school fun), but a year and a bit ago I got antibiotic resistant pneumonia, was prescribed a fluoroquinilone for it, and that totally threw me for a loop. (Eventually I found a great paper on repairing the mitochondrial damage – a bit more preliminary than I like, but I take what I can get – and those methods have helped a lot. But I’m still not all the way back and it drives me nuts.)
One shouldn’t a) need to get a PhD to get doctors to listen to them (but it’s worked so well for me…) and b) end up finding out so many of the effective treatments through their own research (I have this wonderfully collegial relationship with my doctor, which involves sending him a lot of links to articles from the primary literature….) Not to mention, it’s hardly a guaranteed method, and I wonder how long I can stay on this tightrope.
I understand a little as I suffer from cascading migraines (which is hereditary on my mom’s side), which means I get the headaches constantly. If I am lucky I will get 5 days a month without needing any medication, light or heavy depending on the level of pain that day. I will say, I do try to take as little medication as possible, as it is expensive as well as depending on the medication in question can have the possibility of becoming addictive( We don’t want that!!!). So although I wish I could help you more, I can only send you good thoughts from Florida where I moved from Canada as a teenager. I hope you are having light pain day’s this week. I will work on next week, later. 🙂
chronic pain sucks. Thank you for sharing about fibro my ex was diagnosed with fibro and less than two years latter died from cancer. If you have been diagnosed with fibro please ask for a cancer screening it is important. I live in canada and have worked at a cannabis clinic for 14 years. If you can where you live please look up info on thc and cbd for chronic pain. We have a lot of clients suffering from chronic pain that get relief from cannabis. It is helpful for anxiety as well, and look up cbd and migrains. Our clients are finding it helpful. I hope you have many many more good days than bad. Dee
WOW. Just WOW. I’ve always loved your fun zaniness, and attention to deeper underlying issues in the world and in the worlds you build. I frequently read, and reread your books, especially when I want to escape from the world, or the ugliness in the world. Your beautiful kitties are also wonderful to hear from, and I love your “rants“ that are honest, and unapologetically spot on, regarding important issues. I am so sorry to hear about your problems with chronic pain and other various issues. I am humbled by your willingness to share the details to make your points regarding statistics in chronic pain, and various diagnoses. thank you, thank you, thank you. Please know that your candor is greatly appreciated and even prized. I am so so glad that you have found and are working with, an amaze ball Doctor who is helping with this very big problem. we all need someone who can support and understand us, and help us to deal with life‘s many trials and challenges.
Hang in there. Can’t imagine what you have to endure. Thoughts and Prayers to you
Cats are great therapy animals.
Dear Sneaky Kitty Critic: I am one who is right there with you at present Actually I wish I was right there with you, because we might have fun laughing at our pain. I’m recovering from breast cancer, and have found that finding a laugh at SOMETHING can be helpful. Even if it is a internal debate as to whether you really, really need to pick something up that you just dropped. Usually the answer is no.
I, like you, have been inundated with people who want to be helpful, but are usually ignorant as to how symptoms/diseases can be treated. They mean well…As they say in the South, “Bless Their Hearts”. And no doubt like you, sometimes I’ve been in tears, and at other times I’ve been whatever creature is beyond a bitch. But we just keep putting one step ahead of another, and by doing that we prove our strength and badassness. (Not sure that that is a word. Should be.) I’ve learned to ignore unwanted, incorrect information. The one thing that is both amusing and helpful to do is to take people up on their offer of helping. “I wish there was something I could do. Oh, I wish I could help.” Say yes to these people. Say, “why yes, you could bring dinner over tomorrow night” or pick up my dry cleaning, or go to the grocery store for me.” Or if you really dislike them, “Can you take the cat to the vet for me?” That will teach them. Hopefully this is a strong lesson for them, that you shouldn’t socially offer to help if you don’t mean it. And it could be they really didn’t know what to say or do, and they will appreciate the suggestions.
My heart is with you. If you are one who believes in a God, my prayers are truly with you. If not, very, very positive thoughts are going out with you at this time.
By the way, one way I can help is that that I own all of your books, except the the ones that I have pre-ordered. (Duh.) So my money does follow my mouth.
Very best wishes and regards. Stay strong.
Susan Martin
Thank you for sharing 🙂 I have severe arthritis and I am 38. I didn’t get diagnosed until 10 years ago and I spent most of my life hearing people tell me the pain couldn’t be that bad and it was all in my head. It was so belittling to not be able to get out of bed and be told I was doing it for attention. I was not able to be diagnosed through blood work and it took until arthritis ate through the tendons on my hand to have it diagnosed. I know have very little movement in my hand from fusing the tendons together and the same is now happening to my dominate hand. On top of this my knees and shoulders kill me. I literally have to lift my leg up with my arms to get in the shower.
It makes life so hard. Most days I am at a 4 or 5. Most days I dont want to get out of bed. If it weren’t for my 3 kids I probably would not.
Thank you for such an amazing post. I hear you and am grateful for the validation you gave to all of us who suffer quietly. Knowing someone is out there that knows the feelings I face every morning helps me understand I am not alone.
Thank Divine for therapy cats! I have a prescription from my doctor for the fur person who lives with me. Spine damage sucks. Arthritis sucks. Depression and anxiety suck. Pain meds don’t always work on a bad day, but the furry therapist never goes off duty!
Bless the therapy kitties, and bless the good pets who moved into another loving home.
I have arthritis in one knee (and little to no cartilage on one side of that knee, yay for bone grinding on bone) and sometimes standing and “just moving around” really hurts. It is in NO WAY comparable to your pain, but I understand your frustration with the whole deal. It sucks when your body refuses to do what you want it to and people are dismissive. I am glad that you have an amazing doctor!!
Thank you so much for this post and all the Jedi hugs! I have a constellation of health problems, all of which are ‘invisible’, several of which started in childhood and which are various levels of debilitating. Severe depression since age 9, asthma, severe migraines since 12 (in fact have been told I should have been on disability for the migraines alone before I turned 18, ech hindsight), a couple other autoimmune issues that basically function similarly to migraines (triggered by things like stress, infection, outside environmental issues), the list goes on.
Between the armchair diagnoses, the well-meaning (???) “well my sister/friend/co-worker has this and just takes a couple asprin and is fine” no really that means they don’t have it and you don’t understand what this is, the “have you tried exercise? losing weight? exercise and losing weight are the solution to everything don’t you know?”, and the out-and-out disbelievers, some days it’s all TOO MUCH. People don’t seem to realize the sheer TOLL the effort of daily taking care of yourself takes. And then all of of the garbage other people bring? Ergh.
I love and appreciate that you share your works of escape and therapy with us, since I discovered your books they have become hands-down my number 1 go-to “I feel crappy can’t function feel better” books. And they’re great and make me giggle even when I’m feeling good 🙂
Also hurray for therapy cats! I have three therapy cats currently. One for hugs, one for snuggles, and one to supervise and provide extra care or chase me to bed if she thinks I’m feeling bad. Therapy cats are better because they purr. It’s scientifically proven to help heal :p
As I read this post, I cried. I was misdiagnosed for 15 years, everyone threw around fibromyalgia and heavy narcotics, then Rheumatoid Arthritis and more narcotics. Then the panic disorder & depression kicked me down the road for a while. Finally, I found a team (Rheumatologist, Pain Management, Dermatologist, counselor) that actually broke it down and got some real answers!
Essentially, my immune system hates me. Psoriasis, psoriatic arthritis, hidradenitis suppurativa (VERY PAINFUL!), AND both sacroiliac joints are blown to smithereens (try taking a step without this 2mm thin joint. It’s not gonna happen without tears, I promise!).
I’m in my early 40s, can’t walk without a walker (if at all, some days), can’t focus for long, and the pain doesn’t ever end. Ever. So, now I’m on a cancer drug infusion to try and keep my immune system from shredding the rest of my body (bones, joints, skin). And to top off this sh!t sundae, my husband has advanced stage MS, is in a wheelchair, and can’t remember his own name most days. So, I feel a GREAT deal of empathy for anyone who suffers from chronic pain.
Too often, we are dehumanized, marginalized, and scolded for our limitations. There is a great stigma attached to chronic pain sufferers. We are “faking” for attention or drugs, we are “lazy”, we aren’t “worthy”. I wish people would check their first impressions at the door.
I am blessed with a few true friends and family that, while they don’t understand, they do try to empathize. I read to escape the prison of this body. I appreciate every word written, because I understand the struggle and pain that each cause. Blessings to you, and I hope you have more 1-3 days in your future!!
Chronic pain for a lot of people is invisible to see. I understand this because I’ve had a bad back and found out how bad when I applied for a secondary part time job and failed the physical. This was at 29 years old. Now at 66 I can tell you it’s a lot worse.
My primary doc had an MRI done and came into the exam room and said I’m sending you for physical therapy which won’t help but we have to follow the rules. It didn’t work so I was sent to a pain specialist and when he walked in he said your back is awful. He started pain injections. First two worked third one didn’t, so off I went to surgeon. I was scheduled for surgery. The surgeon had to break my back between L5&S1 since they had shifted with L5 sitting on half on S1. Surgery took approximately 6 hrs and I need more but we are attempting to use pain management.
I have knees that need replacement. That’s not going to happen anytime soon. I get injections in them when I can’t stand the pain. And keep going.
I retired at 62 since all of my docs had told me I could end up in a wheelchair if I didn’t. I had been a nurse with last number of yrs in dialysis. Which I loved.
So Ms RJ, I sympathize with you. I will pray for you. Pain is misunderstood, it is a sneaky, manipulative snake. And most people want to slap a diagnosis on it quickly and send you out the door. I was lucky I had most excellent doctors. I cannot sympathize with you enough. Sitting kills me even in my nice lift chair (although I can sit there longer, but can’t read there due to strain on my crappy neck). So take care and write as you can, as we all love your books. I just finished Karmas second book. Can’t wait to see what she brings in the third.
God Bless you.,
Carol Smith