“Lose Weight” Is Not Medical Advice

Hanging out at the Fisherman Street Art Market in New Orleans. Copyright 2016 Lindsay Palmer.

I am fat. I know I am fat. I know that is the first and sometimes only thing people see when they look at me. I have spent the last 32 years trying not to be fat. I have also spent those same 32 years letting other people make me feel ashamed of the flesh I call home, my very physical presence, and the most inherent and apparent part of my identity. For these reasons, I do not need a doctor to judge me by such a superficial standard.

“You should lose weight” is simply not advice. Tell me, what is helpful about that statement? Where is the advice? At what point did the medical professional tasked with helping me manage my wellbeing offer me opportunity, assistance, or resources for accomplishing the goal of shrinking my body? At what point did this medical professional differentiate muscle mass from fat? At what point did this healthcare provider ask me about my lifestyle, or even to track my diet and exercise for further scrutiny?

I know fat is not good for inflammatory arthritis. I know it is important to eat right and exercise. I have struggled with my weight my entire life. Even in times when my BMI was perfect, I saw that I was bigger than other girls my age. I saw boys look past me to a stick figure with a padded bra. I see the clothing racks that have “all sizes”, but only if the biggest size is XL. I have to assume very thin people have similar experiences. I have no intention of body shaming thin people with this blog post. I simply feel the need to point out the superficiality of standard American healthcare.

My body mass index (BMI) is far from perfect now, but not for lack of effort. The calculations used in a primary care physician’s office, based solely on weight versus height, are not true BMI calculations. That would require a water displacement test. Remember when we were children, and the PE teacher pinched us with a caliper at the end of every school year? That obnoxious test is a better indicator of health than the standard BMI calculation. Muscle weighs more than fat, so weight is a mostly useless statistic. Even the name of the test tells us mass is a more useful measurement than weight.

My tall, thin father died of a sudden heart attack at the age of 30. Do you think anyone ever told him he was unhealthy based on his appearance, weight, or height? No! The health problem that killed him went undetected. What if his doctor treated his high cholesterol and smoking as red flags?

I weigh very close to my all-time high, but I also have more muscle mass than ever before and wear clothes one to two sizes smaller than my largest. I work out regularly, but I avoid high-impact movements to protect my joints. I like vegetables. In fact, I weighed my heaviest after being a vegetarian for over three years, so don’t tell me to lay off the bacon, the carbs, the soda (which I drink rarely anyway), the whatever. The fact is that healthcare should be based on an individual’s health, not their outward measurements.

We all have goals for our health, and fitting into a smaller size simply doesn’t rank for me. Sure, I would love to be svelt and desirable by all standards, but I’m not delusional. I care about my cardiovascular health, having enough strength in my hands to compensate for joint stiffness when turning a doorknob, maintaining and improving my flexibility, not vomiting after every meal because of a medication. And whether I like it or not, sometimes getting out of bed at all is the day’s greatest accomplishment because letting my feet hit the floor is excruciating. When was the last time your doctor asked how your exercise routine was going, asked if any aspect of a healthy diet was particularly troubling, or offered any resource to ensure your lifestyle choices are as healthy as they should be? 

The American healthcare system is a study in hypocrisy. Doctors treat fat people as a blight and thin people as the gold standard, despite an individual’s overall health. We brag about the quality of our healthcare and simultaneously fret over the obesity epidemic. Americans are getting bigger, but the body shaming seems more prominent than ever before. I go to a doctor’s office for advice about my health, and his response is to call me unhealthy and send me on my way with no further discussion.

Why does the conversation always begin and end with a two-word judgement? “Lose weight.” Make me, literally. If a doctor expects me to lose weight, then I expect that doctor to help me do so in a safe and effective way.

Keepin’ On Keepin’ On … Slowly

Just showing off my new lapel pin by Moon Balloon. copyright 2016 Lindsay Palmer

I’m just going to be blunt: I’m really dragging ass this week. I am tired. Ridiculously tired. Like TI-ERD.

I’m drained in more than the physical sense. I am worn out from being busy, emotionally tested (but that is for a different post after I have gained some distance on the topic), and sick. It is not the same as when a healthy person says they are worn out. I am sick in a way that makes me need and crave sleep but also keeps me from sleeping with any kind of regular pattern. While I know it’s ill-advised to sleep it off over the weekend, I also know that is the only way this feeling will pass. And I know it will start all over again as soon as I catch up. I have to hope next week will be better than this week, but accept that the rest of this week is an uphill battle no matter what I do.

I hear and read about other chronically ill people choosing their activities based on how much energy they have, but the truth is that is not always an option. This week has been exceptionally busy, and I have chosen to add some social engagements into the mix. I plan to volunteer at the Walk to Cure Arthritis in Kansas City this weekend, which means I need to wake up around 4:30 a.m. just to get to the venue on time. My usual recovery day has been compromised, but I am happy to make that compromise for a good cause.

The thing that always knocks me off-center is missing my regular yoga class. Of course, I missed it this week. I practice at home, but I rely on a trained instructor to push, focus, and advise me. I just feel wrong without that dedicated hour of my week. I thought I would make up for it the next day in a different class, but it was cancelled. I’m just off, and it adds to the fatigue.

Generally speaking, I do not have a lot of responsibilities to other people. I have a job and bills to pay, and that’s about it. When weeks like this occur, I know they will pass. That knowledge is like chasing the ice cream truck with no money in my pocket. I have to convince myself that truck will come around again when I have spare change.

An Oasis in the Desert Heat

Last week, I had a pretty gnarly flare involving my feet. In my desperation, I called the rheumatologist’s office. Just today, I finished the prescribed steroid dose pack. I have felt unnaturally fantastic the last couple of days.

Generally, I am not a fan of steroids because they wear off. But boy, do they ever make me feel good! Steroids bring instant gratification to a suddenly capable body. I have energy, flexibility, and mobility. Yoga on steroids is my version of winning a race or medaling in the Olympics. I bend. I twist. I stretch. I relax. I breathe. I beam. It’s spring, and I am twitterpated with normalcy.

Days like these offer a glimpse into the perfect health I don’t have. And then they disappear. The steroids fade just as quickly as they kick in. I will sink back into my struggle to perform the mundane tasks that were so easy hours ago. I will eventually forget how good I feel today and maybe that it’s even possible to feel this good. I will be complacent in my mediocre abilities. I will forget how it feels to put my weight into my wrists without pain, how far back my shoulders can rotate, and how straight my arms and legs were during a wide-leg balance yesterday. I will tire again, accept my swollen joints as my personal standard, and allow my pain to dictate too much of my day-to-day life.

This week is a mirage, a glimmer of the unattainable goal. It is a reminder of how remission can feel and how sick I really am. It is a reminder to be honest with my doctor about how crappy I feel and that, no, crappy is not actually normal. I will continue my yoga practice with many shortcomings. I will continue in pursuit of slow progress and in memory of this invigorating mirage.

When I was still a normal person

  
A friend with whom I mostly communicate via social media recently started taking methotrexate for her psoriatic arthritis. She was scared. She worried about losing her hair. She felt robbed of her reproductive rights. She anticipated all of the horrible side effects, just like I did when I started methotrexate. The shock of being prescribed long-term chemotherapy is indescribable. And yet, I found myself trying to comfort her and downplay the fear.

We, the patients, are forced to accept compromises that are never truly beneficial to anyone. It’s a matter of how sick we are and how sick we are willing to make ourselves to tolerate the original sickness. A patient must weigh their options and decide if the disease is worthy of the treatment. People who live this internal debate everyday know the drugs are scary to a healthy person and helpful to an ill person wanting to pass for healthy, and in this routine, we sometimes downplay the potential horror our chosen course can cause us.

Yesterday, I ran across an old note I typed on my phone the day I started methotrexate. It is a reminder of what the shallow end feels like. My disease up to that point had always been “mild”, and I was finally dipping my toes into the pool of difficult decisions where some of my acquaintances constantly tread water. Just hearing the instructions from my doctor led me to cry in my car as I was leaving the rheumatology clinic.

So, as a reminder to myself and anyone else who lives in a state of mundane acceptance, here is what went through my mind on October 25, 2013:

I just took my first dose of methotrexate and folic acid about half an hour ago. So far, I haven’t hurled, lost my hair, bled, died, had lymphoma, lost weight, or shit myself. Score. There is, however, a definite belching situation that makes me worry for my vomiting prospects. Honestly, I think if I do puke, it might be from anxiety over the potential side effects of a medication I have been avoiding for about half of my life.

When you are being treated for “mild” arthritis, you thank your lucky stars you don’t have to take harsh, dangerous drugs like methotrexate or remecaid. When the mild drugs don’t help (or don’t help enough), you suddenly make a leap to oh, well at least it’s just methotrexate. That’s nothing compared to Humira, gene therapy, narcotics, or “real” chemotherapy. After all, the sulfasalazine made me vomit almost every day, so what’s one or two days each week?

I noticed when reading the drug information that came with the prescription that:

1. it is too long for the normal information sheet,
2. rather than saying to stop taking the medication if side effects are bothersome or persistent, it says to ask your doctor how to cope,
3. it has every possible side effect,
4. it can kill me in any number of ways,
5. it’s one more reason not to get knocked up, and
6. it’s a cancer medication that may actually cause cancer. (WHAT?)

Seriously, why not just say what you mean, pharmaceutical manufacturer? THIS IS POISON. Things the doctor doesn’t tell you until he’s ready to write the prescription:

1. “It doesn’t fully kick in for a couple of months,”
2. “You have to have monthly lab work as long as you take this medication,”
3. “You have to take folic acid as long as you take this medication,”
4. “For the love of all things holy, do not get pregnant,” and
5. “Even if you don’t want to try it, your insurance company probably won’t cover a more effective medication unless you try methotrexate first.”

As far as my arthritis goes, I feel mildly shitty. My back, jaw, hips, wrists, fingers, ankles, heels, knees, shoulders all hurt. Some intermittently, some constantly. Some ache. Some have sharp, shooting pains. Some only hurt when I move. Some only hurt when I am still. My spine is particularly bothersome today. That being said, I feel better today than I have in a couple of weeks. I declined a couple of social opportunities yesterday evening in favor of falling asleep while watching Project Runway All-Stars from my bed.

So, I blog now.

When I decided to start a blog, I hesitated until I found the perfect name. I knew my subject because it is a constant presence and has been for about half of my life. It’s arthritis. It’s other parts of my life too, but the arthritis is a constant. It plays a role in everything I do, no matter how much I try to hide or ignore it.

I have polyarticular juvenile idiopathic arthritis (JIA), fibromyalgia, and chronic bursitis. I have an autoimmune disease, which caused other illnesses. At the ripe old age of 32, chronic pain, fatigue, stiffness, medication, doctor’s visits, and side effects are old hat. I know others who can say the same. This is simply my experience.

So, why Bound Angles? I love yoga. It’s my favorite form of pain relief. A bound angle pose is a yoga pose in which a strap literally binds parts of the body together. Doing this allows a deeper stretch. It pushes past physical limits by introducing new limitations to the body. I can produce no better metaphor to explain striving for my best life with a debilitating disease.

The word arthritis has connotations of old age and disfigurement. People hear it and don’t even bat an eyelash. Oh, you have arthritis? So does everybody. In reality, that is one type of arthritis, osteoarthritis. I find too many people self-righteous in their ignorance about arthritis and other autoimmune diseases to keep my thoughts on the subject to myself. I hope offering my own experiences can provide insights to what the commonplace “A” word really means.