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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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.

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. 

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.

Let’s Get Physical…because you have no excuse…apparently

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hivehealthmedia.com

When I was a kid, around 11 or 12, my dad decided I was fat and needed exercise. So, he began getting my fat ass up at 6 am and had me do a Christian aerobics video. In the dark, I stretched and flailed about, hating every minute of it.
I’ve always had a difficult relationship with my weight. I’m not the kid who always liked playing outside or sports. While I loved playing football or soccer in gym class, running walking the mile and doing pull ups in front of everyone was an exercise in humiliation. Oh look, the chubby girl can’t pull herself up. What a surprise. By middle school I thinned out some, but I’ve always been several pounds overweight. I have, at various points, been able to use Weight Watchers and aerobics to shed the pounds. But now, 32, two kids, and a diagnosis of fibromyalgia later, it’s been really fucking hard.

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That’s what has made the media circus surrounding Maria Kang’s What’s Your Excuse? meme difficult. Let me start off by saying that I don’t hate her. I think the meme is obnoxious and shows that she doesn’t have a clue as to how to encourage fitness in us “slammin’ body challenged” folks. (Oh em gee. The only thing that was stopping me from exercising until I look like you was a viral post of you guilting me into exercising. Thanks, Maria!) I think the language is confrontational, not inspirational. But I don’t think she was trying to communicate with our masses in one of the worst ways ever, it just worked out that way. (Perhaps she should take some notes from Drew Manning.)

I’m not the first to blog about this, (Janelle Hanchett of Renegade Mothering and Jezebel) and I’m sure I won’t be the last. But what I want to do with this post is to approach it from my struggle with fibromyalgia. The thing is, I do have reasons and excuses. I have fibro pain that made me limp through my walk today. I hate exercise. Sometimes I’m so fatigued that I can’t get up off the toilet or out of bed. Sometimes I’m just majorly lazy. I run out of hours in a day to accomplish everything that should have been done that day. I don’t make exercise a priority. Sometimes I don’t have the strength to cook a super healthy meal. I’d rather eat a burger and fries than grilled chicken and kale chips. I can’t help that my pain meds have added about 30 pounds to my body. I can’t/won’t stop myself from pounding down a bag of gumdrops or a bunch of cookies when I’m stressed/because they’re there. I have intrusive thoughts that torture me until I satisfy a craving. I give up easily because *whine* it’s really hard and I’m already fat. I might as well go for broke.
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The thing is, it’s harder for those of us with an illness like this because we have to straddle that in between line of unable/forgiving oneself and able/making excuses. (Anyone else’s crotch hurt?) Maria Kang’s meme strikes a nerve because it’s both completely wrong and completely right for someone living with fibromyalgia and struggling with weight issues. Her flippant meme creates a false dichotomy of fitness gurus and lazy ass bums, irresponsibly ignoring those of us who actually do have legitimate reasons to not have six pack abs. But it also forces us to confront the excuses we could lay waste to if we were honest in confronting them.

Now, if you’ll excuse me, I have a chocolate pie to make.