I actually want to do burpees

  

I’ve never been one to love exercise.  Once we moved back to Virginia at age 7, I was given Twinkies and discovered the Disney channel; going outside to play was no longer at the top of my “to do” list.  I played softball for one disastrous season where the coach hardly ever showed up, but wasn’t otherwise involved in organized sports.  I preferred reading or playing the piano.  I have always been one of the kids that only made it through the first half of the first lap, (out of four) on the mile run before having to stop and walk.  Consequently, as I’m sure you can imagine, I was always on the chubby side. 

Finally, I got sick of it.  Enough was enough; clothes weren’t fitting and I was tired of getting winded from fairly simple tasks.  I began Weight Watchers and going to aerobics with strength training.  I lost weight and inches and toned various problem areas.  I wasn’t “skinny”, but I was at a place where I was happy enough with my body and fitness level.  

 

Me, at my smallest

 
 I was heartbroken when I had to discontinue aerobics, with the realization of fibromyalgia setting in and the toll one aerobics session took. While I can cut calories, my body has always been very resistant to shedding pounds without exercise.  As I’m sure I’ve mentioned on here before, doctors will repeatedly tell fibro patients that they must exercise to feel better.  And, as I’m sure I’ve mentioned on here before, my immediate reaction is to want to punch those doctors in the throat.  I knew they were right, but it’s difficult to exercise, (yes, even to walk) when the exercise programs are not built for people with chronic pain.  I decided that my inability to exercise was bullshit, and attempted to work with others to create such a program.  Unfortunately, the person on whom I was placing most of my hope, used me and my idea to complete her senior independent study, strung me along for months, and then left me hanging out to dry once she graduated college.  

On the plus side, I’ve been able to keep up with physical therapy, which includes aqua therapy.  In the pool, I am able to perform exercises, like squats, better than I ever could on land.  The exercise doesn’t affect my weight, but my strength is much improved, which helps me tolerate the pain a little more.  My therapists remind me than I’ve come leaps and bounds from where I began, (in the beginning, I was worn out after 5 reps of tightening my core) but I am still frustrated.  It’s difficult to push from my mind that I was once capable of so much more.  

The thing that has really stirred anger and aggravation in me lately are the motivational exercise videos and pictures various people post or like on Facebook.  This morning, I watched a video of two women about my age, working out.  As I watched, I settled into what felt very much like jealousy.  I coveted the ability to perform the motions their bodies performed easily.  I wished I still had the ability to squat.  I envied their ability to jump like them, their feet leaving the floor effortlessly.  I felt like a kid excluded from a club as they executed burpees.  Yes, as first brush, it was clear to me that my annoyance stemmed from jealousy.  As I wallowed in my jealousy, I noticed words of bargaining intruding.  If only I didn’t have fibro, I would push myself and exercise like this.  Now that I know what I’ve lost, I wouldn’t take my body for granted again.  And that’s when it hit me: I’m not jealous.  I’m grieving.

Insurance companies like to play doctor

On Sunday, Mike came into the kitchen with a piece of paper in his hands.  He said, “Now, Julie, don’t freak out,” which, as we all know, is the universally accepted way to guarantee that whoever is about to receive bad news will be totally calm and collected.  My body tensed up and I offered a wary, “Ooookaaaaay?”
The letter was from our insurance company, United Healthcare, cheerily telling me that in order to save money, they were no longer going to cover my Lyrica.  The medicine my doctor prescribed for me to treat my fibromyalgia.  The medicine that has made the difference between my ability to walk or not.  BUT!  Not to worry.  I would have the “opportunity” to try other lower-cost alternatives now!  Once I sampled at least three drugs from a veritable buffet of pharmaceuticals, I could then be allowed to resume taking Lyrica.

I began sobbing.  Once again, the insurance company presumed to know better than the doctor and the patient.  Profit shares were more important than patients.  While my body isn’t in perfect condition, I have finally reached a point where my functionality, pain, and energy are better than they’ve been in a long time.  A combination of physical therapy, acupuncture, therapy, and a truckload of medicine and supplements fit together in a Jenga tower of healthcare for me.  If one piece is removed, everything will come crashing down.  Additionally, Lyrica causes weight gain for patients genetically predetermined to gain weight on such medications, like me.  The last time I went off Lyrica to try gabapentin it was an abysmal failure.  The more I took, the more pain I experienced, to the point of not being able to touch my feet to the floor, let alone walk.  So back on the Lyrica I went.  My body went, Oh, gee, this is a new drug that’s telling me to give Julie an additional 20 pounds.  To try and fail with another drug would guarantee more weight gain for me, making my body virtually untenable.

I looked at the list of drugs I needed to try. It was laughable to me.  If ever there needed to be more evidence that so many believe fibromyalgia to be all in the patient’s head, this list of drugs proves it.

1. Cymbalta
An anti-depressant that I’m already taking.  While it is a drug that is specifically marketed to help with pain caused by depression, it stopped managing my pain within a few months of beginning the medication.  Anecdotally and according to doctors with whom I have spoken, this is common with Cymbalta.

2. Gabapentin (commercially, Neurontin)
It does work for some, but you have already read how it worked out for me.

3. Effexor XR
An anti-depressant.  I’m already taking an a anti-depressant.  Two, actually.  I don’t need a third.  It can be used off-label to treat diabetic neuropathy, but medications that are actually meant to treat that condition are preferred.

4. An anti-depressant, like amitriptyline
Again with the anti-depressants!  Oy!  Depression doesn’t cause fibromyalgia; fibromyalgia causes depression.  Wouldn’t you be a tad bit depressed if you were in constant pain, knew you were going to be in constant pain for the rest of your life, and could no longer participate in life the way you once did because of your pain and fatigue?  This is also a potential off-label treatment drug but, again, I don’t need a third anti-depressant.

5. Savella
What’s the problem with Savella?, you may ask.  After all, it’s a drug that specifically treats fibromyalgia.  Here’s the thing.  I am in fibromyalgia forums where people ask about experiences with Savella all the time.  Out of the hundreds of people who say they’ve been on Savella, two have had a good experience.  Two.  Noooooow, I’m not a bettin’ woman, but those don’t seem like terribly good odds.  One of the bad side effects of Savella is terrible nausea. I am a complete pussy when it comes to nausea.  Give me pain any day over even the slightest bit of nausea.

Once I was able to pull myself together, I began Twitter-shaming United Healthcare as quickly as my brain could think and my fingers could type.  On Monday, once I explained that trying new medications is not like sampling ice cream before you choose your cone, I was given the prior authorization number for my doctor to call, (which was conveniently left off of the letter) to tell insurance that I need to be on Lyrica.  Because the prescription wasn’t enough.

Via Garfunkel & Oates

Via Garfunkel & Oates

Crushin’ It

Lately, I’ve been crushing life.  If by “crushing” you mean sucking enormously at managing to keep up with everything.  The last several weeks have been filled with doctor appointments, physical therapy, acupuncture, remodeling the kitchen, trying to keep the house from being swallowed by mess, and barely qualifying as a parent and Girl Scout leader.  I look around the house each day and feel physically ill by the state of it all.  My inability to keep days and activities straight in my head make me worry about what my brain will be like when I’m old and gray.  A state of panic chases me and causes me to stumble into the next day.  

Treating my fibro
I have finally managed to begin physical therapy and acupuncture.  I love water physical therapy!  It allows me to use muscles and exercise in ways that I just can’t on land.  Therapy on land is transformative.  It turns out my SI joint and pelvis were out of alignment. It’s also been really painful to lay on my side/hip. After one session, my PT was able to adjust me, and the extreme tenderness and pain that made me yelp when she touched me was gone. GONE!  I’ve also been given very doable home exercises, some of which can be done while I go about my day. At my last session, I found out I have a weak butt. Or weak butt muscles, anyway. My homework is to clench and release my butt. 

I have had a few sessions of acupuncture or, as I like to call it, Napping with Needles.  The jury is still out on how I feel about it, but I know it’s too soon to tell if it’s making any difference, for good or for ill.  I will say that my last session seemed to make all the difference in the world. I am fighting a cold and had gotten very little sleep the night before. I was so bad off that Mike had to drive me to my appointment. Within an hour or so, I felt fantastic!  That seems like a pretty big turn around for there not to be some causal link.

One aspect of acupuncture I was not aware of beforehand is that the therapist will manipulate your body and limbs in order to loosen them.  That’s fine, but it is difficult to completely relax when the therapist is a man and leaning back makes you crotch-adjacent. Having my torso twisted, side to side quickly, so that my arms shake like cooked spaghetti and my boobs shimmy like the worst burlesque show ever, reduces me to embarrassed giggles.  Getting to lay quietly in the dark with soft music for 30 minutes, though, is pretty great. I actively try to avoid falling asleep so no one hears my snoring.  I’ve also learned that it’s pretty difficult to clear my mind, as my mind is a chatterbox with an attention deficit.

The second appointment with my new rheumatologist was much improved from the first.  My new endocrinologist is awesome; she is absolutely convinced of the existence of fibro and realizes that plenty of other doctors treat fibro patients like crap.  Finally, I’ve begun seeing a nutritionist in an attempt to lower my inflammation and lose weight.  I love her!  She is all about adding the good foods and refuses to forbid foods. Rather than making food bad or off limits, she’s more focused on making foods that will help you achieve your goal a habit.  She also understands that a person’s body in chronic pain processes food much differently than a “normal” body.  I’ve found myself reaching for better food and not craving a ton of crap. 

This is such a burden.

Taxi service
I’ve been taking Rachael to a slew of doctor appointments lately.  She’s been in therapy, as suggested by the psychologist who tested her for ADHD.  I’m not sure what, if anything, it’s doing for her.  But she seems to like going, and the therapist seems to understand the difficulties of our home.  We also had Rachael evaluated by an occupational therapist for handwriting and fine motor skills, as the results of her ADHD testing suggested that those difficulties could be masquerading as an attention deficit.  Results said she’s a bit behind and could use some therapy.  Since then, her handwriting seems to have improved and she’s not having as many difficulties as she was 5-6 months ago.  I may try to have her therapy over the summer.  I feel like the harm of pulling her out of class on a weekly basis outweighs the benefit of OT at this point.  

Finally, Rachael saw a gastroenterologist a couple weeks ago.  She’s suffered with relux and tummy troubles for a long time.  While Pepcid has made it better, her pediatrician wants to make sure that any underlying cause is found and corrected, rather than just continuing to treat the symptoms.  Rachael is scheduled for a upper endoscopy at the end of June. She was a little nervous, but understood the procedure and was fine…..UNTIL THE DOCTOR SHOWED HER A STUPID CARTOON VIDEO ABOUT THE PROCEDURE!  In the video, “Scopey” said that while he was inside, he might take some tissue for a biopsy. So NOW she’s freaking out to the point of losing sleep over it. Dude will get a nastygram over this. 

Kitchen remodel
The other major thing taking up most of my time is giving the kitchen cabinets a facelift.  I always thought the 20 year old , builder’s grade oak cabinets were disgusting, but getting up close and personal with them showed me that we had been living like animals for 6 years.  The amount of filth caked on them and the number of cracks in the wood made my embarrassment for whenever we had company skyrocket retroactively. 

I’m so close to being finished. It seems like there is always some hiccup or touch up that prevents me from getting on with things. But I do have one cabinet fully completed. 

 

All that’s left is to affix the knobs, which we haven’t chosen yet. Several doors are ready to be hung, but the hardware store didn’t have enough hinges. Because, of course.  

Hopefully I’ll be back blogging regularly again soon. I actually started writing this post weeks ago. But Zoë is snuggling with me and my brain is clear for the first time since I began writing this, so I can finally tell you what’s been going on with me. 

Namaste, Spoonies

 

Panda is more flexible than I

 

I had my first ever yoga class last night.  It’s supposed to be gentle yoga, but it smacked me up hard.  I am now becoming one with my heating pads.  I’m taking the yoga class through the nearby rec center.  It’s a really small class, only 7 of us.  And I’m not actually the youngest in the class!  Huzzah!

I laid my thin yoga mat down on the hardwood floor, sat down, and said, “Nope,” and grabbed a thicker communal mat to lay under mine.  I’ve always hated sitting on the floor, especially without something to lean against.   So I sat there, waiting for class to begin and trying to figure out how to position my body — Criss cross applesauce, butterfly, pike, bent knees, pretzel sit.  None of them felt comfortable, especially since I was also trying to hide how jacked up the bottoms of my feet were.

Belly breathe

Class began with diaphragmatic breathing, which is easy for me.  As long as I didn’t have to do anything else while doing this deep breathing, I was golden.  But, of course, yoga doesn’t work that way.  Very quickly I found myself trying to remember to breathe, rather than hold my breath, as we did core exercises and my body melodiously chanted, Fuu-uuck youuuuu.  For the most part, I had to modify the poses.  Each time I lifted my arms toward the heavens, I felt like Winnie the Pooh doing his daily exercises.

It was like a sauna in the room before class began, so I was drenched in sweat by the time we were doing mountain pose — I was a strong, sweaty mountain.  I’m pretty sure I lost a pound just in water weight.  The skinny woman next to me was wearing long sleeves and wasn’t breaking a sweat, while I was wiping my face and fanning myself.  (I probably could have used a squeegee.)  I felt like offering her some of my body fat to help insulate her, so she too could sweat out her stress, toxins, and the Easter candy she ate.

As the class stood, doing tree pose, I started feeling really good.  I stood there, staring at the fuzzy, tan room divider and felt fantastic.  My body was calm and my mind was quiet. I was a joyous tree, swaying in a gentle breeze.  Of course, I didn’t have my leaves up while I was doing this swaying, but that just means that I was joyous to the very core of my trunk.  So really, if you think about it, I was the best a tree pose because I didn’t need leaves to show how good I felt through swaying.

As class began to wind down, we made our way down to our mats.  From a seated position, we engaged our core by slowly lowering our bodies to a laying position.  I was immediately reminded of one of the reasons I had quit aerobics and strength training; the fibro tender points on my butt were pressed.  I did my best not to yelp in pain, and adjusted my breathing to the rhythm of Fuck.. fuck.. owwwww, fuck.. fuck.. owwwww.  But I had finally made it to the end — deep breathing while lying on my back. I was a little annoyed that I had to relax with my palms facing the ceiling, which isn’t a relaxing position for me, but ¯\_(ツ)_/¯ .  So I breathed and stared at the dim ceiling and listened to Enya’s May It Be and thought, That’s right, Enya.  I am like Frodo.

Talking calmly through emergency room-level pain

Today, I’m pretty sure I was stabbed with white-hot pokers while I slept.  I talked to my family normally through, what would be for a “normal” person, pain worthy of sending them to the ER.  This is slightly inconvenient, as Zoë’s birthday party is this weekend, and the house is a complete wreck.  (Although the house isn’t as big of a deal, so long as my father-in-law doesn’t mind stepping around boxes, toys, and crushed goldfish crackers and a kitchen that smells like a restaurant dumpster.)  I know the more I do this, the easier and less painful it will become.  And anyway, you know what they say:
Whatever doesn’t kill you makes you die a slow, agonizing death in the alleyway where it shivved ya.

As I Lay Hurting

 

I had my first pain management doctor’s appointment today, as the new rheumatologist I saw at the beginning of the month doesn’t do pain management.  I went in hopeful.  I should have known better.  Once again, I was met with fat-shaming and incredulity.  And after he was finished beating the shit out of my body, confirming what three other doctors have already diagnosed, I was treated to feeling like a drug addict when I signed the agreement not to sell my tramadol and handed them a pee sample.

I don’t really feel like writing a long, coherent post with subject, verb, tense agreement, so here are the highlights.

  • Is there something in the Doctor’s Guide to Being an Asshole that says that when a patient complains of fibromyalgia, the doctor must poke and prod as hard as possible so that the patient gasps and screams?  It’s like if you went to the dentist, complaining of a sore tooth, and the dentist shoved a sharp instrument up through it to make sure you’re really telling the truth.  I felt like I’d been on the wrong side of Mike Tyson by the time he was finished.
  • Maybe this is my own personal quibble but, when did doctors stop giving physician referrals?  I keep having doctors tell me, “You need to go see this specialist,” but don’t give me a place to even start.  Are we just supposed to figure it out for ourselves?  At the last doctor visit was the rheumo telling me I needed to go to physical therapy, but to make sure it was somewhere that has experience treating fibro.  Today, I was told to go see a dietician for weight loss and a non-inflammation diet.  And when I asked for professional referrals, they looked at me like I’m ridiculous and bothering them.
  • Why do doctors insist on fat-shaming their patients?  I was in a fuck-ton of pain when I was 100 pounds lighter, back before there were weight gain-causing meds and the inability to exercise.  Will weight loss make me healthier?  Sure. Will it eliminate my pain?  No.

 

Image via imgarcade.com

I’d like to get these doctors to understand how it feels to live with chronic pain, especially when it comes to exercising, (yet another thing I got shit about today, as I don’t do enough aerobic exercise.)  You know what I’d like to?  I’d like to beat the shit out of them with a baseball bat, tell them to drop and give me 100, and then scream in their faces like a drill sergeant:
WHAT’S THE MATTER, PRINCESS?! DOES IT HURT?  IS IT HARD?  ARE YOU GONNA CRY?  IS LITTLE BABY PRINCESS GONNA CRY?  Do you want to stop?  You do?  GIVE ME ANOTHER 100!

I’d also like to strap them into some sort of device that creates fibro pain, (like the ones that cause douchey husbands to feel what labor feels like) and then make them go for a 10 mile run.  RUN, FORREST! RUN!

  • “Studies show that Percoset and other narcotic pain meds don’t really help fibromyalgia.”

The pain doctor actually said that to me.  I just wish my body had known that when I had to take it while I was at Disney so I could have the ability to walk.  And I’m really tired of doctors saying that studies show this and that, when it’s really just an excuse to do whatever the hell it is they feel like doing. Of course, narcotic pain meds don’t cure fibro.  But on days like yesterday when I could barely walk without crying because of how much damage he did to my body during the exam, it would have helped. Fuck the “studies”.

I really wish I understood why doctors insist on under-medicating pain patients before they’ve even exhibited signs of addiction and abuse.  Doctors don’t do that to other patients in pain.  It would be the equivalent of a doctor saying to a person with a broken leg, “What you need to feel better is a cast and crutches, but you’re going to have to just walk it off and find some other way to feel better.”  It sounds ridiculous, but that’s what doctors do to chronic pain patients all. the. time.

Once again, I feel stuck.  Being stuck with a shitty doctor is almost like being stuck in an abusive relationship- you can’t leave because, if you do, it will look like you’re the one to blame.  It will look like I left because I’m a drug-seeker, hoping to find a dealer with a medical degree. You’re an addict, Harry.

Finally, a message to all the doctors who think I don’t exercise…

Another day, another asshole doctor

 

Keeping count like the Doctor

 
I finally went to see a new rheumatologist yesterday.  She was recommended to me by my primary care doctor and a friend.  I went in, hopeful that I would find this doctor to be respectful and one who would listen to my opinion and experience.  I left feeling as though I had been burned by the fire of a thousand side eyes.  On the one hand, she was quiet and let me speak.  On the other hand, hearing what I had to say is different from listening, and it’s on a completely different plane from believing.

Doctor Speak

How doctor’s look during a fibro appointment


Generally doctors don’t come right out and say exactly what they’re thinking. Well-trained in the art of throwing shade, they tend to belittle you in such a way that it sounds like they’re trying to help you.  We Spoonies are experts in doctor-speak.  We’ve heard, it’s all in your head, you hysterical (wo)man, in many dialects: “How is your stress level?”; “Do you have a history of depression?”; “Oftentimes it’s actually depression that causes pain.”  Other common conversations involve indirect, or even aggressive and direct, accusation of drug dependency. My “favorite” so far, as a woman who has gained weight because of medication, an inability to regularly exercise, a medically confirmed genetic tendency to easily gain weight, especially when medication is involved, and an availability of Girl Scout cookies, is the insinuation that I’m just a lazy, fat load who would feel better if I just exercised and lost weight.  Yesterday, as the doctor smiled derisively and subtly rolled her eyes, I was essentially called a drug-addicted fat load who just needs to get off her lazy ass and exercise.

“We want to go ahead and get you off the pain medication so that your body is no longer dependent on it.”
You’re addicted to opiod medication.

“Do you exercise?”
Do you exercise? Because you really don’t look like it.

“I can’t exercise too much, but I have two little girls, so it’s not like I’m sitting around.”
“Yeah, you really need to exercise. You could do yoga, tai chi, walking, water aerobics, you could just walk in the pool.”
Doing all the things you do as a stay at home mom aren’t good enough. And with all these options available to you, you really have no excuse not to exercise, you lazy woman.

“It’s actually been difficult for me to get into a class that works out. I was enrolled in a yoga class, but it was cancelled because of lack of enrollment. And if you go private, it’s really expensive. That’s why I’m working with someone at George Mason, in the therapeutic recreation program, to develop an exercise program for people with chronic pain. It’s frustrating for me because, before I got sick, I was doing aerobics and strength training regularly.”
“Really?”

I’m going to be stone-faced, smiling, and slightly roll my eyes because Excuses excuses blah blah blah excuses. Your exercise program is an adorable way of avoiding real exercise, so I’m going to keep nodding and giving you side eye. Wait, what? You used to exercise? You could have fooled me.

“Have you tried Topomax?  It’s like Lyrica, but it helps you lose weight by making some foods taste unpleasant.”
Let’s try this other drug because you really need to stop eating and lose some weight.

Hostile Intentions
So why are doctors so hostile toward people who live with chronic pain?  I believe it comes from prejudice, ignorant assumptions, misinformation, and lack of education.

1) Prejudice
It’s been pretty well established in research that general attitudes toward overweight persons are negative.  These attitudes do not suddenly cease to exist at the doctor’s office door.  Researchers at Johns Hopkins found that physicians were less likely to be empathetic toward and build rapport with overweight patients.

“Obese patients may be particularly vulnerable to poorer physician-patient communications, Gudzune says, because studies show that physicians may hold negative attitudes toward these patients. Some physicians have less respect for their obese patients, which may come across during patient encounters.”

Anecdotally, I, and plenty of people I have talked with over the years, have experienced such negative attitudes from doctors over the years. No matter the complaint, the recommendation is always the same: You need to lose weight. Granted, sometimes it’s perfectly within reason for the doctor to give such advice. But all too often, the doctor walks in and decides that weight is the problem, before even hearing the complaint.  I remember one visit I made several years ago because both of my knees had suddenly begun hurting.  The older, male doctor told me that they’d feel better if I just lost some weight.  Granted, I was a little overweight at the time, but not so much that my knees should have suddenly given me the level of pain I was experiencing.

2) Ignorant assumptions
Coupled with number 1, doctors make assumptions about how a person lives their life, simply by looking at their weight.  All they see is an overweight person.  They don’t care how you came to be that way, nor your daily routine.  They don’t see you hardly sitting down in a day because you’re tromping up and down stairs with baskets of laundry, cleaning up toys, doing the dishes, shopping for groceries and lugging all the heavy bags inside, walking kids to the bus stop, chasing them around playgrounds, and helping them ride their bikes, who generally has healthy snacks of fruit and Greek yogurt.  All they see is a fat person who is too lazy to join a Crossfit box and eats junk all the time.

Ignorant assumptions are not confined to lifestyles.  They are also made about individuals who take heavy duty pain meds just to function like a “normal” human being.  It is assumed that if a patient takes narcotics, particularly opioids, they will become addicted, if they are not already.  People who live in chronic pain tend to be afraid to ask for pain medication because of how doctors may view the request.  According to Social Work Today, “‘Living with chronic pain is exhausting,’ Barrett says. ‘The undertreatment of chronic pain can lead patients to appear to be engaging in drug-seeking behavior. I have had clients whose doctors have not taken their physical pain seriously.'”  The article goes on to cite a study from 2011, which found, “For patients with chronic noncancer pain, opioid prescription remains highly controversial, and even in the wake of prescription guidelines and educational efforts, primary care physicians continue to practice under misconceptions about appropriate opioid use vs. addiction, leading to patient undertreatment (Wolfert, Gilson, Dahl, & Cleary, 2010; Hooten & Bruce, 2011).” 

3) Misinformation and lack of education
I’ve combined that last two because they go hand in hand.  Plenty of doctors still do not believe in the validity of fibromyalgia.  I’d say it’s pretty difficult to effectively manage the pain of an “imaginary” medical condition.  In addition, many doctors do not have the training to administer effective pain management.  This lack of training not only includes the inability to prescribe an effective dosage, it also makes them fear that their patient will become addicted, should they receive narcotic pain medication.  According to a 2003 study published in Pain Research & Management: the Journal of the Candian Pain Society, poor pain management is something that doctors themselves acknowledge.  In a survey of 100 Canadian physicians, researchers found,

For moderate to severe chronic noncancer pain, opioids were the first-line treatment of only 32% of physicians (16% preferred codeine, 16% major opioids) because a significant number preferred either non-steroidal anti-inflammatory drugs (29%) or acetaminophen (16%). Thirty-five per cent of GPs and 23% of PCs would never use opioids for noncancer pain, even when described as severe. Chronic pain was deemed by 68% of physicians to be inadequately managed. Almost 60% thought that pain management could be enhanced by improved physician education. Identified barriers to opioid use included addiction potential (37%) and side effects (25%).”

The study goes on to conclude that, “Even among physicians experienced in chronic pain treatment, there is a reluctance to use opioids for severe nonmalignant pain. One-half of the survey participants believed that there was a need for improved physician education in pain management, including the use of opioids.”

Why this fear of addiction?  Where did it come from?  According to the same, above-referenced article from Social Work Today, it stems from a coincidental rise in prescription drug abuse at the same time doctors began prescribing opioids for non-cancerous chronic pain.

As a result of media attention on increasing rates of prescription pain medication abuse, those with chronic pain who had previously found improved functioning, psychological health, and quality of life with appropriate opioid use began to face increased difficulties receiving effective treatment.”

This leaves chronic pain patients to, effectively, sing for their supper.  Patients must prove that they really are in enough pain to require such heavy duty medication and overcome any biases and trepidation the doctor may have about prescribing it.  It also gives patients the onerous task of somehow allaying any suspicions that you are simply engaging in drug-seeking behavior to feed an addiction.  I have done this song and dance myself.  I put it off for a long time because I didn’t want to be judged as an addict.  Once I was prescribed Percoset for breakthrough pain, it took me over 3 months to go through 30 tabs, (many of them taken so I could walk at Disney.)  The new rheumatologist wasn’t buying it, though, and refused to give me a new prescription.

Now what do I do?
My first instinct is to turn tail and run hobble. Although there were some positives of the encounter, I am still left feeling dirty all over. It’s pretty clear that she doesn’t take me seriously, nor does she believe that I won’t abuse medication.  Her hostility toward me was reflected in the comment she made to me while I was having difficulty locating a word because of fibro fog: “This is why most patients write things down.”  Not one to take an insult lying down, I fired back that I couldn’t have done because it was a question about something she had brought up during the appointment.

If I were to leave and go elsewhere, again, I know that I would risk the appearance of drug-seeking behavior.  You didn’t give me the drugs I wanted, ergo, fuck you and on to the next dispenser of DEA controlled substances. I also realize that her attitude is pervasive, so leaving probably wouldn’t do any good.  I do hope that future encounters will allow her to get to know me, for me to know her, and a better doctor/patient relationship to form.  Until then, I’ll just need to stay informed, stay strong, and get my Stuart Smalley on.

God Does Not Work That Way!

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Since the dawn of man, people have looked for ways to explain their world. Comets were once thought to be bad omens. To have a mental illness or epilepsy meant you were possessed by demons. A bad harvest meant that the goddess, Demeter, was displeased with you. The creation of the Earth was, (and still is, for some people) explained by a poem written around the 6th century BC. And today, people explain illness and tragedy as God’s will. When people can’t explain why a child died, they say, We can’t understand the mind of God. If people are suffering, whether with a chronic illness or becoming overwhelmed by life, others will try to comfort them with, God will never give you more than you can handle. When that doesn’t ring true, they add on “without Him”. Some proclaim that God allows you to suffer because your faith is great, so you may be an example to others, like Job. The flip side of that is that you haven’t been healed because you haven’t prayed enough or your faith is too weak.

YOUR LOVE IS LIKE BAD THEOLOGY
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We’re going to assume, for the same of argument, that Jesus was/is who He said He was/is. The Son of God traveled, not only preaching the Good News, but also healing the sick and raising the dead. I can certainly understand why people may glean from the Gospels the idea that God allows people to suffer.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents have sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work.”
John 9:1-4 NIV

I think plenty of people stop at verse 3 and hold it up as proof that God made or allowed this man to be blind so that God may be magnified and glorified. They completely miss the actual point, which is to do God’s work by helping others. Add on verses where Jesus asks people who are asking for healing whether or not they believe in Him, and it’s no wonder where this suffering theology comes from. But I find it telling that, while Jesus may have asked people if they believed, (and for all we know, it could have been something the disciples slid in there while writing the Gospels) He didn’t make them go through a checklist or faithfulness song and dance to prove themselves before healing them. In one case, Jesus found it more important to forgive a man’s sins, rather than physically heal him. It was only after the Pharisees pitched a fit did Jesus add in healing the man’s paralysis, just to shut them up with a resounding So’s your face! (I may be paraphrasing.)

Sometimes I think we forget and only look at the words of Jesus. We forget that His actions are every bit as important. Jesus healed the sick. When someone asked Him for healing, He didn’t say, Nah. Imma sit this one out. But you can head on out from your leper colony and tell everyone how awesome I am. Hosanna, y’all! To claim that God only heals those who call upon His name and are deemed worthy enough is to call God a capricious asshole. It completely contradicts what we see in God through Jesus. What is revealed is a loving God who mourns with us. We don’t see a God who brings suffering. And we certainly don’t see a God who’s concerned about getting credit for good works. (“Go and tell no one…”)

I think, too often, we are like the Pharisees. When we don’t understand or something doesn’t fit in nicely with our worldview, we cling to what we know, (or what we think we know.) Sayings and beliefs, and even superstitions, are passed down from generation to generation. When we use them to explain things in our human experience, we are looking to our own understanding, (and explaining it as God) rather than to what Jesus actually showed us long ago.

He replied, “Isaiah was right when he prophesied about you hypocrites; as it is written:
‘Theses people honor me with their lips, but their hearts are far from me.
They worship me in vain; their teachings are but rules taught by men.'”
“You have let go of the commands of God and are holding on to the traditions of men.”
Mark 7:6-8 NIV

STOP IT! YOU’RE NOT HELPING!
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Image source

Phrases like, “God will never give you more than you can handle,” has made me want to reach through the computer and shake people many a time. (Especially when it’s thrown out flippantly when someone is clearly suffering.) This time, I was set off by the “helpful” comments that people in my chronic pain support group shared. All of these were things that were said to them about why they are made to suffer.

Jesus suffered pain so others would not suffer much more in hell. Your suffering makes you like Jesus, and it draws you closer to Him.

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(An ability to create a massive fish fry out of two fish and to form my liquid metal body into anything I want would also make me like Jesus, but you don’t see that happening. Or was that T-1000?)

I was once told by a Christian therapist that God wouldn’t heal me [be]cause I made him mad.

(So He took his toys and went home, or…?)

Our church said that our family [was] suffering with many illnesses so that the rest of the town doesn’t have to suffer.

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(John Coffey? Is that you?)

Look…those of us with chronic pain and illnesses appreciate your concern and support. But, like most people, we just want to vent or have a shoulder to cry on. Some things are just shitty, horrible, and unfair. Trying to have a simple, pseudo-spiritual answer to make sense out of something that doesn’t make sense isn’t helpful. And think about this: how many peoples’ faith are you possibly destroying by saying such things? When people have suffered for years without relief, saying these things leads people to the logical conclusions that they, 1) Aren’t good enough for God, 2) That God doesn’t care about their suffering, 3) That God is oblivious to their needs and tribulations, and 4) God is a capricious jerk with sadistic tendencies. And this is assuming that they don’t give up belief in a god altogether.

Please, just tell us I’m sorry, or That sucks, or What can I do to help? Those go a long way. If you want to pray for us and healing, that’s great. But also pray for our families who suffer with us, for comfort, hope, and strength. Because, as Jesus so often pointed out, the non-physical is just as important. Just be there for us. SHOW us you care.