Arthritis
Top 5 Films for Chronic Illness
Including illness and disability in pop culture plays a huge role in de-stigmatizing such conditions. Film proves a vital tool in accomplishing this task. Believe it or not, the film industry has produced a virtually endless list of movies about disabilities and health. Simon Birch, Awakenings, Mask, It’s Kind of A Funny Story, One Flew Over the Cuckoo’s Nest — the list goes on. These are my top five films for people with chronic illnesses.
5. Cake
Starring Jennifer Anniston, this film shares a woman’s battle with chronic pain, grief, and depression after a tragic car accident. She befriends a stranger with ties to her chronic pain support group and eventually finds the courage to face her problems. The film includes physical therapy sessions, support group meetings, and candid conversations with those closest to her.
4. First Do No Harm
This 1997 made for TV film stars Meryl Streep as the mother of a young boy suffering from epilepsy. When traditional western medicine fails her son, Streep fights the medical community to explore alternatives, including the now widely accepted ketogenic diet. A huge part of this film is coping with side effects of dangerous medications.
3. Still Alice
This award-winning film starring Julianne Moore, Alec Baldwin and Kristen Stuart follows a family’s struggles with the matriarch’s familial Alzheimer’s Disease. As the disease progresses, family dynamics change. The film shows the toll Alzheimer’s takes on a person’s mental faculties, mental health, career, and personal life.
2. Frida
This biopic about Mexican artist Frida Kahlo highlights a life of chronic pain and infection following a devastating bus accident. Kahlo is notable for her self-portraits, which she began painting when she was healing from her initial injury. The film —Selma Hayek’s pet project — is visually stunning, using Kahlo’s own artwork to communicate her pain, as well as demonstrating outdated medical intervention.
1. Finding Nemo and Finding Dory
I can’t say enough about these two animated films. This duo tops my list because they are ripe with characters whose disabilities and ailments are simply part of the characters’ identities. Nemo has a deformed fin that concerns his father, although the birth defect does not hinder his everyday activities. Dory has a memory problem which impairs all of her social interactions, yet she manages to thrive in nearly any environment. Side characters include an anxious squid, a shark recovering from a fish addiction, an institutionalized octopus, a blind whale, and a porpoise with dysfunctional sonar. The films often treat disabilities as commonplace personality quarks, making jokes without demeaning the characters. The disabilities and mental health disorders are out in the open, some affecting the respective characters more than others. The target audience is children, so watching these films is a great way to introduce the concept of disability at an early age. That is is the main reason Finding Nemo and Finding Dory rank number one for me.
What are some of your favorite pop culture moments for disability and illness?
What’s the Problem?
Secondary conditions have a misleading reputation. If they’re secondary, then they’re obviously not as severe as the primary condition, right? Wrong!
My juvenile idiopathic arthritis is my primary condition. Like many other autoimmune diseases, the arthritis can cause other conditions that are equally debilitating and sometimes more difficult to treat. My doctors have assured me it is common for people to have more than one autoimmune disease at once, too. For me, this all adds up to:
- acid reflux – chronic heartburn, vomiting, chest pain, nausea, gas
- duodenitis – inflammation of the duodenum, which is just below the stomach in the digestive tract, with similar symptoms to the acid reflux but with the bonus of abdominal pain
- irritable bowel syndrome – soupy poopies, gas, abdominal pain, constipation
- chronic urticaria – chronic hives and sun sensitivity caused by elevated anti-thyroid antibodies, which is a precondition of Hashimoto thyroiditis
- type 4 hypersensitivity – delayed allergic-type skin reactions to common household chemicals
- Reynaud’s syndrome – loss of circulation in the fingers and toes in cold temperatures, leading to numbness or pain
- fibromyalgia – a nerve disorder that causes muscle pain, chronic fatigue, and brain fog
All of this is in addition to my active inflammatory arthritis. I actually didn’t realize how long that list was until I started typing it out just now. It’s a doozy. Some of these ailments were caused by my inherent health problems, and some were caused by medical treatments. Some are under great control or cured, while others sometimes eclipse the arthritis itself.
Currently, I’m dealing with some skin problems flaring due to a combination of medication, seasonal allergies, and a severe sunburn. Before you ask, yes, I was wearing sunscreen. However, I did not plan on being in direct sunlight for the majority of the day, and I needed a stronger sunscreen applied more frequently. I saw it coming about halfway through the day. I got hives before the sunburn hit, and then I felt like my skin was literally on fire for several hours until I could get indoors. My skin is now incredibly dry, peeling like a snakeskin, and still red and itchy over a week later. Accidents happen, and now I am dealing with the aftermath. I could have planned better, but I took it for granted that I hadn’t had a skin incident in months.
The fibromyalgia is more subtle, but also a bigger hindrance to fulfilling my daily responsibilities. It flares when my arthritis flares, and it’s not always distinguishable from the other diseases. I don’t always realize I have forgotten something important, and that worries me. Maybe I am exhausted, but is that from the arthritis, fibromyalgia, medication, or stress of living a normal life? I may feel great and go all out at the gym, causing severe muscle pain and stiffness. I then spend the next week recovering and uncertain if the pain is from a tough workout or a real problem. I have even been unable to straighten or raise my arms over my head for up to a week on multiple occasions after an aggressive gym session. I know that is not normal. Is it? Mind you, my aggressive gym session is not all that aggressive compared to my athletic friends. I can’t do a pull-up or run six miles a day. I’m doing good to walk two miles on the treadmill at a slightly slower than moderate pace. I pace myself, and these incidents still happen.
All of this is to say I spend much of my time feeling like crap for what other people see as no apparent reason. It’s difficult to get my day started due to the digestive issues, fatigue, irritated skin, morning joint and muscle stiffness, and occasionally numbness in my fingers and toes. None of these alone is reason enough to take a day off work. Have you ever tried calling in fatigued? It doesn’t work. Have you ever called in achy or itchy? I don’t imagine that going over well with my boss. But here’s the thing: secondary conditions are still medical conditions with real symptoms. I have to treat them and cope, just like a primary condition.
Housework
I am a terrible housekeeper. I live alone, so all of the household chores are mine. I sometimes go on cleaning rampages, but not nearly as often as I should. I make charts telling me when to clean what, assigning each task to a particular day of the week based on the rest of my schedule. The chart is useless when my first flare happens.
If I hurt all over, the last thing I want to do is get down on all fours and scrub the bathtub. I hate doing dishes because the hot water makes my hands swell. Running the vacuum makes the bursitis in my shoulders flare. I don’t cook for myself as often as I should because standing on the hard linoleum floor hurts my back, and standing in general makes my feet swell.
So, I live in a less than presentable home. I rarely invite people over because I know it’s a mess. I get by. I’m not exactly a hoarder or living in complete filth, but my cleaning habits are taboo enough that I keep my apartment closed to the outside world. There is clutter. There are dishes in the sink. There is dust. There is always laundry. Always laundry.
But you know what? It’s okay. Nobody has to live with this but me. The handful of times I have invited people over, they have not hidden their criticisms, so I have revoked their visitation rights. It’s my mess to manage. Sometimes managing is good enough. I can handle the mess when I feel better. When I do, my cleaning rampage will be for my own satisfaction.
Bills, Bills, Bills
I just paid most of my monthly bills for July. Last in the pack was the bill I dread most. It was a medical bill that I had paid down to a manageable amount … until this month. It nearly doubled. In one day. This particular bill is for allergy treatment, and it is just one of many expenses I have incurred in order to treat medical problems. Allergy coverage is pretty much non-existent on my health insurance policy, as it is considered a luxury. I mean, who needs to breathe, right? So, it’s expensive. The online bill pay option had a notes section, so I filled it in as follows:
This bill has broken my spirit. Just letting you know.
I’m sure someone will actually read that and be moved to tears.
I was fortunate enough to pay off my student loan debt and a bill from an emergency room visit at a different hospital for anaphylaxis this year ( as earlier stated, breathing is a luxury, so this was also quite expensive), so I am sure I will find a way to handle it. But I still believe medical debt is among the most degrading possessions a person can own. My body doesn’t work correctly, so I have been penalized by people who want to be paid for doing their jobs — seems reasonable enough. The problems for me are that this debt is something I consider a necessity, it is in addition to treatment for a chronic autoimmune disease, and my allergy treatment will last a total of no less than five years. I am just over one year into it. I can’t wait to take a peek at the next bill. Really.
Peace of Body, Peace of Mind
Getting in a little more yoga in the hallway before bed.
I mentioned in a previous post that I was looking for a gentler yoga class than the vinyasa class I have been attending. Over the past couple of weeks, I have been to a beginners/relaxation class, my usual vinyasa class, and a beginners/strengthening class. They all have their benefits, and they are all so different. I enjoyed each of them, but I suspect that was mainly because my body was behaving itself. Today, I paid for an eight-week session in the relaxation class, and I am glad I did.
After class tonight, My body felt more peaceful and relaxed than it has in a very long time. I have struggled for months with poses I have previously done for years with no trouble. It was a great reprieve to Get back to basics and focus on getting it right. I could then dig a little deeper if and when I felt capable. When savasana came around, I felt like time flew by. My back was flat on the floor and fully relaxed. In the seven or so years I have been doing yoga, I can count the times this has happened on one hand. After class, I was able to catch up with old friends who also took the class. Yoga, hugs, conversation — what’s not to love?
I left feeling relaxed, not depleted; present, not focused on pain; and rejuvenated, not anxious. I am looking forward to next week’s class. I still hope to get back into a more advanced class eventually. I may pop in to the other classes I have tried from time to time, but I know I am in the right place right now. Reconciling all of my concerns about my body function with the experience that originally drew me to yoga brought me a tremendous sense of peace and gratitude.
Uncertainty
I am changing my medication. I hate doing that and have avoided it for as long as I reasonably can. I tolerate methotrexate well, better than most other medications I have tried. For a long time, it worked too. But now it doesn’t. So I am trying Arava. I am not thrilled about it. Obviously, I hope it works better than the methotrexate without giving me horrible side effects.
I’m not some mindless pill-popper. I research, talk to my doctor, and prepare myself before starting a new medication. I also have experience in this kind of transition, and I anticipate at least some side effects. I have posted about changing medication before, and about the side effects of the medication I stopped taking last week. Every person responds differently to their meds, and the methotrexate was effective enough that it was worth the side effects for me. That does not mean the same will be true this time.
Some fun I can look forward to this time: Hair loss. Worse hair loss than with the methotrexate. Stomach upset. Low blood count. Liver failure. Cancer. Mouth ulcers. Skin irritations. Diarrhea. Weight loss. I’m kind of looking forward to that last one, to tell the truth, but only if it isn’t due to the diarrhea. Nobody wants to shit their way to an “ideal body weight.”
I worry about the side effects, but I worry more about efficacy. I am afraid the new meds will not work, and I will have wasted months, maybe even a year of my life, on a drug that is worthless to me while my body deteriorates. The worst part of that waiting game is the in-between phase — the part when my body is slowly purging methotrexate and building up levels of Arava. I know this phase well, but it is more prominent when switching from a fast-acting drug like Arthrotec (an NSAID) to a slow-acting drug like methotrexate (a DMARD). That was a doozy I wish to never relive. I better get used to flaring, because I imagine the rest of the summer is going to be full of it. And not your average flares, but uncontrollable ones. It will be the kind that doesn’t respond to over-the-counter NSAIDS, heat pads, exercise, ice packs, or meditation. Flares that stay with me for weeks or even months. Flares that keep me from flossing because it hurts too much to move my shoulders and wrists. Flares that trap me in my apartment, crumpled into a heap on the couch and clinging to a heating pad for dear life. Flares that sedate me, slow me down, keep me from saying the words I mean, and make sitting at my desk for eight hours each day pure torture. Flares that other people actually notice. Flares that other people don’t understand.
It’s been less than a week since I stopped the methotrexate, and I was already flared. Maybe Arava will be my savior. Maybe it will work instantaneously with no side effects. That would be paradise on earth. I am taking a calculated risk. In order to be saved, I have to put myself in danger first.
My Yoga Mat Is a Battlefield
How do you know when to push yourself farther and when to back off? For me, I usually have to be in physical pain before I can accept that I have gone too far. Throughout my eight or so years as a yoga student, I have had many, many flares. I used to be able to push past the initial pain I felt at the beginning of a yoga session and use the deep stretches to soothe my arthritis pain and release muscle tension.
It was pretty simple. I even devised a system to check my level of mobility early on in a vinyasa: if my back popped during a standing forward fold and I was able to graze the floor with my fingertips while my legs were straight, I was good. I could probably move freely in my practice without further injury.
That test is for the birds. Lately, that mid-back pop that used to accompany an internal sigh of relief is now the audible warning. My body has changed, and not entirely for the better. My wrists can go months functioning perfectly fine, only to whimper under the pressure of my own body weight before I make it out of cat/cow pose today. I switch to fists for as long as I can stand it, until the pain spreads to my knuckles under the pressure. Then, during my first downward dog, my brain is split between the pain in my wrists and the new pain in my heels and ankles. My back and shoulders make their presence known. Sometimes it is an intense stretch, part refreshing and part tedious. Other times, it is excruciating. I don’t always see it coming, and then I am momentarily trapped in a position causing me agony. As the session progresses, it either gets worse or better. I may end up doing dolphin or half dog instead of downward dog, staying in a forward fold at the front of my mat, or going all out before the session ends.
I know exercise and meditation are good for treating arthritis pain, so I continue in whatever modification I can muster. Sometimes that means staying in child’s pose for a full vinyasa or longer. Sometimes it means letting my body take the extra time it needs to warm up and then joining the rest of the class later on. Sometimes it means giving up for that day, just getting through the class without audible signs of my struggle, going home defeated, and trying again tomorrow.
Those are the days I feel like a failure. Even though I know it will pass, and I will have a more enjoyable practice another day, the bad days take a toll. Even though I know it is my physical body and not necessarily something I have caused to happen, I still take it personally. I can’t help but fight against my body. Admitting defeat is the hardest pill to swallow, and believe me, I swallow many of them. Having fought this body for half of my life does not make any battle easier over time.
I have decided the vinyasa class I have been attending regularly is too much for me, at least for now. I am upset, but I don’t want to harm myself by trying to progress faster than my body can handle. I plan to return to the vinyasa class when my body is more agreeable, if my body is ever more agreeable. Until then, I need to take a class I can handle, without the agony of defeat.
Workplace Fashion Tips for the Chronically Ill
When dealing with a chronic illness in the workplace, it is important to keep your style on pointe. Brain fog and chronic fatigue should always occupy your thoughts, making their way into your wardrobe. Looking literally effortless during a persistent struggle to “just get it together” can only help you in your professional endeavors. Follow these six simple rules to present your best self to clients and colleagues.
Shoes are for losers, but socks are for puddles.
Who doesn’t love that damp and cold feeling of stepping out on a rainy day before putting your shoes on over your socks? It doesn’t happen nearly enough for me. If socks aren’t your thing, try heading to work barefoot. Walking across that gravel parking lot with no barrier between your flesh and every little pebble will only thicken your skin for those days when your style is too normal to be noticed.
Matching shoes are so last season.
Everyone will be looking at your shoes when they see you coming. Make sure they are different styles and colors so everyone will see how trendy you are. Bonus points if one shoe is a heel and the other is a flat. The limp is your own expression of swagger. “Correcting” this look will only make you late for work.
Wear as many items as possible backwards or inside out.
The “Look, Mommy, I dressed myself today” look is in. Backwards and inside out at the same time is even better. Work it, girl.
Spandex is so slimming.
Yoga pants, biker shorts, and sports bras in public are making a comeback. What could be more attractive than always looking like you are fresh from the gym? Buy all the spandex!
Trompe l’oeil polka dots are fierce.
Those aren’t stains! They’re tromp l’oeil polka dots with a balayage fade. The more smeared, smudged, and bled out the better. Spill everything. Only use water and napkins to spread those dots.
Greasy hair is in.
Your thinning hair doesn’t want to be clean! Showers are the worst time for strands of hair to commit suicide. Keep those locks dry and wadded up in a messy up-do. The more visible oil at the roots, the more luxurious the shine. Dandruff adds to the look. White clumps of dead skin and oil — that’s the ticket to the beauty train.
Work that fatigue and brain fog. Ain’t nobody got time for a put-together look. That’s so mundane. This is your disease, and you should feel confident when wearing it on your sleeve. Go forth and be fabulous with your new fashion tools.
Never Alone
Sometimes, people surprise you. Last Friday, about 200 people surprised me. I was distraught about a charity event the small board I joined was scheduled to have. The manager at the venue instructed us to arrive 30 minutes early. I expected to be scurrying around like a crazy person trying to get ready in time.
When I arrived a full hour early, I saw several people representing our charity there already, organized and fully prepared to get to work selling Bingo cards and raffle tickets. Not only were they on task, but they brought in reinforcements, extra prizes, and tons of audience members. I was completely out of my element, being rather anti-social and unorganized for the most part, and I found talking to all of these people there to support our cause unusually easy.
People were excited, and as more people spilled through the doors, the energy became a celebration. Our event was a huge success. Even with a few hiccups, including running out of seating before every reservation arrived, everyone seemed to enjoy themselves and give cheerfully. People who just happened to be there for dinner joined in our fundraising activities. Strangers shared tables to make room for more people. Our supporters were telling their new dinner companions about our charity and encouraging them to join in the fun. I reveled at the sense of camaraderie.
The venue puts on events like this all the time, and even the people working there were astounded by the success we had. In fact, they invited us to do it again in September. They were impressed by us, and we were impressed by them. I didn’t receive a single complaint about the service or food. We even ran out of Bingo cards at one point. People actually cheered us on when I told them we ran out because it meant we made a lot of money. Their positivity was my second wind after a long day of walking around a table hand-collating a book.
We all know how Kansas City can be about the local sports teams, but KC rallies behind anybody who needs it. Businesses donated prizes to our event without hesitation. One business even asked us to make a poster for them so they could advertise our event. Another business gave me a huge stack of coupons to hand out in addition to their prize donation.
As a young, chronically ill person, isolation comes easily. I get frustrated with the apparent lack of people who really understand what I might be going through. Even adequately communicating the problems I face to my doctor challenges me. The lack of other young arthritis sufferers involved in the cause can be disheartening. It’s lonely out there if you don’t learn to speak up for yourself among different kinds of people. Even when I do speak up for myself or others, I sometimes get backlash from employers, friends, colleagues, and complete strangers. I have to assume the same goes for others in my position.
While it may be difficult to build a community of fellow sufferers, Friday’s event showed me there is clearly a community for fellow sufferers. People are willing and able to lend a hand when needed. That is just as important as commiserating with others like me. Our board is small but mighty when supported by those around us. What I saw on Friday was a strong community, in the fight with us even if they didn’t know what exactly they were fighting. The love may not have been directed at me specifically, but I felt loved at that event. I loved each and every person there right back. I hope the handful of members on our board felt all of that love, too.
Bound Angles 