There. I exercised. Happy?

  

I used to exercise on a regular basis.  And then the fibro hit.  My regular workouts caused flares and any floor work hurt like a motherfucker.  So I stopped.  I’ve always been the kind of girl who has to work her ass off just to maintain weight, let alone lose it.  So no exercise, plus Lyrica, equals fat Julie!  Of course, none of this matters.  As far as any doctor is concerned, all my pain would magically disappear were I to lose a bunch of weight.  Didn’t you know?  Skinny bitches don’t have no pain.  No, wait….my sources are telling me that skinny bitches suffer from life-altering chronic pain, too.                 ¯\_(ツ)_/¯  Who knew?  Tired of doctors throwing shade at me and my pants squeezing my tummy just a little too tightly, (plus there’s all the women who have MS and run marathons- they are truly inspirations who make the rest of us look bad) I have finally reached the level aggravation that compels me to do something about my weight.  I’m going to lose this weight and still have fibromyalgia pain!  …….that’ll show ’em.

This morning, I got myself ready to Walk Away the Pounds with Leslie Sansone.  It’s always been my go to, as it gets my heart rate up and works my whole body without being too hard on it.  I put on shorts and pulled my hair back, (because I sweat more than a fat, pervy, mouth-breathing man, synced my Up fitness tracker, and went to fetch the DVD.  Naturally, it wasn’t there.  But I was not deterred; I was working out today, goddammit!  I had a massive headache and no DVD, but this was happening!  I spent a good 20-30 minutes searching the different video services, trying to find something that didn’t scare the fuck out of me.  No, no 30 day Shred for me, Jillian.  I already experience that just carrying the laundry down the stairs.  Fortunately, I found Walk Away the Pounds on Amazon Instant Video.  I paid $10 for something I own two iterations of already and got down to business.  

My cat, Belle, sat there and watched me the whole time.  Because that’s what everyone needs: a fluffy animal, sitting there, silently judging you.  

Bewildered cat is bewildered.

 
Yes, thank you, cat.  You’re so taken aback by my side steps and knee lifts that you fell over.  Asshole.  Despite my judgy cat, I marched on, modifying movements so as not to overdo it.  After about 5 minutes, my calves said, “Fuck you, bitch.  We out.”  It’s an fucking painful interesting sensation, continuing to exercise after you’ve felt your legs freeze in carbonite.  But I did it!  I finished the 15 minute, 1 mile walk.  My head is about to implode and I need to eat all the things, but at least I exercised and am not fat anymore.  Suck it, doctors!  

Wait.  I have to do this again to actually lose weight?  Fuck.

 

Belle, leaving me for dead and licking the salt off of me.

 

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Concerning Pants…er…Leggings

This post begins with a trigger warning.  The pictures you’re about to see may make you say, “Eww!”, “Ugh!  Why?”, throw up in your mouth a little, or feel like your eyes are being dry humped.  

This is how I was dressed when I dropped the girls off at school today. 

This may be the part where you ask god how he would allow such a thing to happen.

No makeup, wet hair, and *gasp!* leggings!  I know. I KNOW!  I just couldn’t help myself.  They were clean, they were comfortable, and so I put them on, even though I didn’t have a shirt that fully covered my lumpy, fat ass and bulging gunt.  I am so incredibly sorry to show this to you and to anyone who had to endure seeing it in person.  No, wait.  Not sorry.  What are those words?  You know, the ones that mean it’s my body, I’ll dress it how I want, and I don’t give a shit what anyone thinks?  Hmmm….. Oh, well.  Maybe it will come to me later.  

Actually, if I’m being honest, I do care.  Or, at least, I care more lately, as I’ve been seeing things on social media, which are essentially shaming people for daring to allow their bums to be seen while wearing leggings.  It began last week when a friend shared the following video with me.

Look, I know it’s meant to be tongue in cheek and to garner laughs, but the more she talked, the more I felt like shit.  My first response was the kind of anger that leaves a lump in my sternum, waiting to burst out with any defensive thing I could say that would make me feel better.  After watching the video, I texted this back to my friend: 


It’s fat-shaming, pure and simple.  You know that the people who make these videos and flow charts are not thinking about skinny people, like them, when they make these.  At the very least, it’s body-shaming.  Because more women, (one of whom is supposed to be a Christian) making other women feel self-conscious and bad about their bodies is definitely what the world needs.  If she is so distracted by asses in leggings that she can’t make it through a shopping run in Target, may I humbly suggest that she stay at home with her judginess and cuddle with it by a nice, warm fire, and leave us fat people alone.  As we used to say in the 90s, that sounds like a personal problem. 

Finally, I’ve referenced flow charts that are in circulation, letting the reader know whether or not society permits them to get dressed how they want to in the morning.  I’ve come up with a new flow chart, which I believe will benefit everyone, skinny and non-skinny alike.

  
  

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.

Summertime ceasefire

It’s that time of year, the time when the temperature gets hot and women from the mid-Atlantic and northward are expected to don a skin-tight bathing suit and act like that’s normal. For women like me, it’s always been the worst. If you’re not a small person, finding a cute bathing suit that fits usually involves some sort of skirt, shorts, or ruffles to disguise cottage cheese flabbiness. I’m on White Whale 2014 countdown, the end time being when I’m expected to take part in this summertime ritual.

Even though I’m hovering around 250 pounds, I’m not entirely uncomfortable with my body. It is what it is, and there isn’t too much I can do at this point to change it. At long as I have cute clothes that fit, I don’t live in too much despair. That is, until, I’m required to wear the suit of shame.
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Image from “Moose” by Stephanie Klein

Women watching other women and judging them is our hockey. Even though no one says anything, you can feel the eyes of people watching and silently belittling you because your thighs jiggle with every step you take. You see the faces people make, or the quiet, yet audible gasps when you remove your coverup to reveal just how large your stomach and ass really are. You are frequently excluded from the rounds of, “Oh! Your suit is so cute!” Or, if you are included, it’s out of politeness and pity. I think it’s even harder for me living in Northern Virginia, where everything is so driven by appearances. Most of the women I do know around here are skinny and in shape. Around here, I’m the outlier. It’s this judgment that brings any self-esteem you have to the edge of the diving board to take an inelegant swan dive into the drained deep end of the pool.
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And if you’re like me, the thing that makes you want to smack a woman is when they’re skinny, complete with thigh gap, and they complain about having to wear a swimsuit. I honestly had that reaction at first when I saw this Twitter post from one of my favorite bloggers, Jamie the Very Worst Missionary.
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Oh, poor you. You’re trying on suits in an actual store. It must be so hard to try on a size 6 and then be skinny and tan in front of other people.
But that reaction was quickly shut down when I read her following post.

Yay! I’m an asshole. Of course other women have insecurities which are magnified best in spandex. How dare I assume to know her story or anyone else’s stories simply because they’re skinny. Lord knows I wish I could walk around with a hovering sign that explained my story:

I used to look like this:
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I look the way I do now because I’ve been through two pregnancies in which I gained a lot of weight. I lost a lot of that weight, but then I gained it all back because of the medication I take for fibromyalgia. I can’t exercise like I used to because it hurts too much. A two mile walk/run left me in so much pain that I couldn’t sit on the toilet for two days without it being excruciating. My face looks like a teenager’s who wears nightly Crisco masks because of the IUD that keeps me from doubling over as shock waves of pain surge through my uterus and pelvis throughout the month. My feet are completely jacked up because the weight gain has caused my feet to spread and crack. No matter has much I scrub, scrape, or moisturize, these deep cracks won’t go away. It’s like walking on knives.

It really shouldn’t matter what any one of us looks like, but it does. It’s our first impression of people. I just hope that this summer, we lay down our arms: those judgy looks; those purposefully just audible whispers; all of our assumptions…. let’s lay them down and realize there is a story under every person. Let’s just be nice to one another as we parade past each other uncomfortably or pull out half the pool with us upon exiting. And folks, we even need to be kind to the self-absorbed assholes who have Sexy and I Know It playing on a loop in their head as they treat you like dirt. It’s not their fault they’re assholes. They probably had too many people telling them how wonderful they are growing up, or no one informed them that it’s not nice to be an asshole to other people. And worst of all, they won’t get to know the great person you are because they don’t care about your story. It’s physically impossible for an asshole to care.