Sunday, March 30, 2014

Showering Sick: Bathing with Chronic Pain

“Why don’t you just go take a nice, relaxing shower?”

This is a piece of advice that able-bodied people love to share with the chronically ill. It makes sense; a shower is the gold standard comfort when they’re dealing with discomfort from a hangover or a chest-cold or just need a pick-me-up. When life is simple, the shower is a place of comfort and rejuvenation.

Having a chronic illness complicates things; that’s common knowledge. What you don’t realize until you’re experiencing chronic illness for yourself is that illness doesn’t just complicate things—it complicates everything. When your body hurts to move and pain & fatigue leave you barely able to stand, that shower changes from a relaxing retreat to a dreaded chore.

So what’s an ill person to do? Getting clean is a basic life necessity, and some of the comforts of a shower, like the warm water, can help improve disease symptoms. Here are some of the tricks I’ve learned for making the shower comfortable for me:

Get a shower stool. I have long touted the benefits of using a shower stool. There are stools and chairs specially designed for the shower available in most drugstores near their other assistive aids, but sturdy plastic stools and chairs also work if you’re on a budget. Shower stools help you conserve energy and prevent pain by allowing you to sit down while you bathe. This goes a long way in improving the safety and comfort of a bath.

Make a schedule. When you’re healthy, showers can just happen whenever you feel like it-- decide you want to shower, hop in, and hop out and go. That goes out the window when you’re chronically ill and have to spoons you’re trying to manage. It’s important that you plan your shower for a time when you’re not totally worn down with pain, but also when you have enough time to let your hair dry totally. I like to schedule for a time when I can decompress from the pain afterward. Developing a general shower rhythm can go a long way to helping with pain, too. Save the really hard tasks like washing your hair or shaving for the very last part of your shower so that you’re not too exhausted to finish everything. And remember that not every bathing task needs to be preformed each shower; it’s perfectly fine (and actually healthier) to go a couple showers between washing your hair.

Use a detachable shower-head. Being able to direct the flow of water means that you can easily clean the areas that need cleaning, while keeping the rest of you dry. This means that you don’t need to deal with waiting for your hair to dry on days when you aren’t actually washing your hair. The high-pressured water from the showerhead can be effective at removing dirt and grime without having to use soap or scrub at yourself. On days when you have a bit more energy, spraying yourself with the different pressure settings can make for an easy massage for tight muscles.

Use products that don’t require opening.
One of the trickiest things about showering for me was trying to open and squeeze the containers that held my shampoo, conditioner, and body wash. When my hands are really hurting, there’s just no way for me to get into those things. To remedy this, I now use bar soap, since it doesn’t require any manipulating to get to the goods. Another handy solution has been transferring products to empty pump containers; since you can use any body part to push down on the plunger you can get out the product on even the worst of days.

Finally, make sure to let someone know when you’re showering. You can’t plan for an accident, and you want to make sure you don’t end up trapped in your tub if you run out of energy or fall down. A roommate or family member could easily fill this role, but if you're living alone you could text someone or let somebody know on social media.

Monday, March 3, 2014

Sochi Not A Fit Olympic Host

The decision to host the 2014 Winter Olympics in Sochi, Russia was met with much criticism. The major criticism is that Russia perpetuates human rights violations, and thus is unsafe for Olympic athletes. While much has been said about the country’s newly minted anti-LGBT laws, I feel that their egregious breeches of disability rights are ultimately why if we believe that a host country has a duty to provide a safe environment for Olympic visitors, then we must find it objectionable to hold the Olympics in Russia, given that an Olympic host country hosts subsequent Paralympic games. While some may counter that Russia hosting the Olympics will help improve disability accessibility and disabled rights in the country, I posit that this is misguided, and the Olympics only provide a façade of accessibility.

One very vocal objection about holding the Winter Olympics in Sochi was that the Russian legal system, and particularly the recent so-called “anti-gay propaganda” law, undermines the legal safety of the LGBT athletes and spectators who participate in the Olympics. Russian officials quickly countered that their current laws do not undermine the dignity and safety of LGBT visitors, maintaining that the participants’ safety is assured[1]. While the truth of the official’s claim can certainly be debated, the fact that the issue was addressed solidifies the notion that the Olympic community believes a host country has a duty to provide a safe environment for the athletes.

If we agree an Olympic host city maintains this duty, it should extend to those participating in the Paralympics, given that the Paralympic Games take place each year in conjunction with the Olympics, utilizing the host country’s newly created Olympic Facilities. The International Olympic Committee and related International Paralympic Committee have agreed that a host city has a responsibility to provide “an environment without barriers, accessible by all.”[2] If this is a standard to which we hold a host city, Sochi is objectionable.

A major component of safety is having an environment one can navigate and ambulate in freely in case a situation arises where one needs to escape. When considering accessibility, Sochi is ill equipped to handle the influx of disabled visitors who include not only disabled athletes but also many disabled spectators, who revel in the international camaraderie fostered by the Paralympic games. Extraordinary accessibility problems like the one recently faced by Olympic bobsledder Johnny Quinn provide dramatic images of a crashed-through bathroom door and a funny story for the media[3], but such a scenario easily could have played out with more sinister consequences if the imprisoned party had been a guest with a mobility-impairment. This example may seem like an outlier, but reports by the Human Rights Watch indicate that Sochi’s disabled residents regularly encounter things such as un-serviced elevators and crumbling, inaccessible sidewalks every day.[4] With Sochi’s environment so inhospitable to the mobility of disabled people, it cannot be considered a safe space for them. This is objectionable for an Olympic/Paralympic host city.

Those in favor of Sochi hosting the Olympics/Paralympics argue that these games could signify a series of good changes for a country that only three decades ago declined to host the Paralympics under the pretense that there were “no invalids in the USSR[5],” and that Sochi2014 may be a progressive force for disability access in the country. They argue that the games may help drive institutional changes that will better improve accessibility in the nation’s future. This seems to be the stance adopted by the International Paralympic Committee. In an online publication, the International Paralympic Committee states that they hope the games will provide “a unique opportunity to enhance social inclusion, tolerance to diversity and active citizenship among... members.” It maintains a host city should encourage the “equity, dignity, and functionality” of all involved in the games by removing social, political, and physical barriers.[6] The IPC has clear hopes that the 2014 games will help establish a standard for progressive thought in the country regarding policies that affect the disabled.

I wish to argue that the changes being made for the games do not guarantee the safety of current disabled Olympic/Paralympic visitors, due to deeper problems of discrimination embedded within the infrastructure. Measures being taken like installing ramps, elevators, handrails and Braille signage provide a façade of accessibility around the newly created buildings, but continue to have accessibility issues with things like accessible building dimensions. Worse, many local buildings have been given a designation of “handicap accessible” by the local government, but have no accessible provisions whatsoever other than the ubiquitous handicapped sign.[7] Sochi residents report major problems trying to traverse public transportation, encountering a pervasive attitude that disabled people should not travel.[8] Complaints made to the local government about accessibility barriers have been largely ignored, which is allowed according to the wording of the laws.[9] These cases illustrate problems within the local hegemony about perceptions of disability and what attention should be paid to the needs of disabled people. While progress in improving accessibility for disabled people is commendable, the veneer of accessibility presented by Russia in Sochi does not accomplish enough to guarantee the safety of disabled visitors it’s obligated to provide.

There was much discussion over the safety of LGBT Olympic visitors in Sochi, since both the international community and Russia consider safety to be important. The conditions in Sochi are unsafe for disabled people. If we believe that an Olympic host city has a duty to protect the safety of the Olympic visitors, then we must consider it objectionable for Sochi to host the Olympics. While some argue that hosting the Olympics be a catalyst for progressive change in Russia, the superficial changes within Sochi do not make the city safe for disabled people, since they do not address deeper societal issues that make the town unsafe.

[1] Smith-Spark, Laura and Nic Robertson. "Putin Says Gays ‘Can Feel Safe’ at Sochi Winter Olympics." CNN, January 17, 2014. .

[2] “Barriers Everywhere: Lack of Accessibility for People With Disabilities in Russia.” Human Rights Watch, 11. September 11, 2013.

[3] Karimi, Faith. “Trapped in Sochi Bathroom, Bobsledder Punches Hole in Door.” CNN. February 10, 2014.

[4] “Barriers Everywhere: Lack of Accessibility for People With Disabilities in Russia.” Human Rights Watch, 7. September 11, 2013.

[5] Ellingworth, James. “Russia’s Journey From “No Invalids” to Paralympic Champions.” Russia Beyond The Headlines.

[6]“IPC Handbook Paralympic Games Chapter.” International Paralympic Committee, 31. Accessed: February 17, 2014.

[7] Mazzarino, Andrea. “100 Days Before Paralympics in Sochi, Barriers Remain for Disabled Athletes.” Global Post.

[8] Lokshina, Tanya. “Breaking Barriers: The Disability Rights Movement in Russia.” Human Rights Watch. Accessed: February 17, 2014.

[9] “Barriers Everywhere: Lack of Accessibility for People With Disabilities in Russia.” Human Rights Watch, 11. September 11, 2013.

Tuesday, January 28, 2014

What Would Rheumatoid Awareness Mean To Me?

In honor of Rheumatoid Awareness Day on February 2nd, Kelly Young at RA Warrior proposed a blog carnival so people could share what rheumatoid awareness means to them. I thought I’d share some of what I believe to be the necessary conditions of a sufficiently aware public:

[Image: Illustration of a groundhog and a Rheumatoid Awareness Ribbon. Text reads "Rheumatoid Awareness Day: Bringing rheumatoid disease out of the shadows: February 2nd: Learn more at"]

• Public recognition that Rheumatoid & Autoimmune Arthritis often affects children, involves systemic damage, and can be deadly.

• Awareness that “arthritis” is a symptom, not the disease. Two of the most common diseases that involve this symptom are Rheumatoid Disease and Degenerative Joint Disease.

• Every hospital system having access to a Pediatric Rheumatologist. There are roughly 300,000 children in the US with Rheumatoid & Autoimmune arthritis, yet there are only 250 board-certified Pediatric Rheumatologists. JRA is roughly 28 times more prevalent than all types of pediatric cancer (10,400 in 2007), yet there are 1,900 board-certified pediatric oncologists. Awareness would change this.

• Institutional accommodations must exist specifically for disease flares. Current disability accommodations in jobs and universities are hard enough to acquire, and most aren’t suited towards people who have disease activity that fluctuates. Current accommodations generally do not involve a flexible absence policy, which would allow those who experience extremely disabling flares intermixed with periods of ability to participate in a more meaningful way.

Sunday, January 26, 2014

ABC's of Pain

One morning at age fourteen, the first morning of my life with autoimmune arthritis, I woke up and just hurt. My chest, in particular. Later, at the Emergency Room, I told them such. When they asked, "how" it hurt, I replied, "a lot." When they asked me to describe my pain, I tearfully replied, "I don't know, it just hurts." The nurse snipped back that she didn't "know what 'just hurts' means." In my naivety (and excruciating pain), I lacked the words to describe my experience. Now, after years of living with pain, I've learned a larger descriptive lexicon, but have always remembered how silenced I was without it. Part of the goal of this blog is to share some of that hard-won knowledge with others.

In the past, we've talked about how to efficiently track one's pain and it's contributing factors, as well as how to communicate one's pain effectively to others. Today, we're going to explore something that's absolutely vital on the road towards getting one's pain diagnosed and treated: using the right vocabulary. Unfortunately for fourteen year old me, "hurting" just isn't a very descriptive way to explain a painful sensation. Agony doesn't promote much word recall, so what I needed then was a pain glossary-- a list of words to help describe the gamut of possible pain sensations. The McGill Pain Questionnaire does a good job of providing some qualitative words to describe pain.

For a few more, check out my ABC's of Pain:

A is for Aching
B is for Burning
C is for Crushing
D is for Drilling
E is for Electric
F is for Freezing
G is for Gnawing
H is for Heavy
I is for Itchy
J is for Jarring
K is for Knotted
L is for Loose
M is for Migratory
N is for Numb
O is for Occasional
P is for Pressure
Q is for Quivering
R is for Radiating
S is for Stinging
T is for Throbbing
U is for Uncomfortable
V is for Variable
W is for Wrenching
X is for eXplosive
Y is for Yielding
Z is for Zapping

Sunday, January 5, 2014

Chronic in the Cold

Cold weather does horrible, painful things to many of us who suffer from chronic pain. With winters first big cold snap underway, now is a great time to share tips and tricks for staying warm, comfortable, and safe while dealing with chronic pain when the mercury drops!

Know your hot-pack options. While a hot pack can do wonders for pain any time of the year, when it’s cold outside they’re even more fantastic. There are a ton of different types of heat packs you can choose from to suit your needs: electric pads and blankets, microwavable pads, hot water bottles, and chemical hot packs. There are benefits and drawbacks to each method, but all are relatively cheap so it’s worth experimenting to find what you like best.

Maintain compression. One of the things that makes cold weather so painful for those with chronic pain is that it often comes along with a drop in the barometric pressure. (I blogged more about why barometric pressure is no good for pain here.) To help cope with drops in pressure, keep your tissues as compressed as is comfortable. There are many types of tights and socks and gloves made specifically for this purpose, as well as shape-wear that utilize compression, but leggings and ace bandages are things you might have around the house that work in a pinch. Being submerged in water is another way to maintain compression, so...

Take hot baths and soaks. The combination of moist, all-over, penetrating heat and the pressure of being submerged under water is blissful when cold weather dials the pain up. Taking a nice, warm tub bath is one of the best, most relaxing ways to enjoy a soak. For many of us, whether due to lack of access or lack of accessibility, baths are not an option, so we must rely on soaking individual body parts. You can sit along side a filled bathtub to soak your feet and enjoy the warm steam, or fill up a sink or basin and soak your hands. Just be sure to moisturize after, as hot water is very drying to the skin.

Limit your exposure. Of course we can’t always avoid the cold, but limiting our exposure to it can do a great deal in preventing extra pain. The obvious part is stay inside when you can; don’t go outside when you don’t have to. Turn the thermostat up a little to accommodate for the colder outside temperature so you aren’t shivering inside, and bundle up with socks and sweaters. If you do have to go outside, be sure to dress in layers, with a non-cotton layer closest to your body— again, this is where leggings shine— plus wind-proof outer layers and a fluffy bulky material like wool or fleece in between. Wear a hat, mittens, and a scarf. Take time to heat up your car.

Put warm in. One of the unpleasant things about the cold is that it causes shivering, which is basically the uncontrollable movement your body makes in an effort to warm itself up. When motion is one of the things that causes you pain, the rapid, uncontrollable jerking inherent in shivering is torture. To stop the shivering, you need to warm your core temperature—one of the fastest ways to do this is by eating or drinking something warm. Tea, cocoa, coffee and soup are quick and easy when you walk in chilled, and will help you warm back up.

Sunday, December 29, 2013

Pain Patterns

Chronic pain is unique in that it manages to be both predictable and unpredictable simultaneously. While long-term pain becomes familiar and unsurprising, sometimes flares of pain come on seemingly at random. It’s common to wonder, “Gee, why am I hurting so much more today?” Sometimes, flares are truly random. But often, when we look through the chaos of the flares we can see that there’s some sort of underlying pattern that precedes periods of higher pain.

Understanding these patterns is difficult, because chronic pain is so multifaceted and private that it’s sometimes hard to notice which outside factors are affecting your pain. Pain journals can be helpful tools while trying to discover what pain triggers you have; use the journal to track your daily pain, along with your daily exposure to various triggers. After a couple months, patterns should begin to emerge. Most of the triggers are unavoidable, but recognizing them is an important step in being able to engage in preemptive self-care.

While each person’s pain is fiercely individual and thus no list can be totally inclusive, there are some common pain patterns Chronic Pain sufferers might want to track.

Stress. There’s no question that stress affects how we experience pain, but the way it affects pain is not well known. For example, in cases of acute pain, induced stress (like the stress from a test) may serve as a useful distraction against pain. However, chronic pain patients have internalized, chronic stress, and the prolonged pain often makes it impossible for the body to stop producing stress hormones. This is correlated with increased pain perception and depression. It seems likely that the association between pain and stress largely depends on whether the stress is chronic or acute, as the difference of their effects on the body can be seen on a cellular level. When keeping track of stress in a pain journal, try to identify the sort of stress you’re experiencing (short-term or long-term, good or bad, etc.) as well as any other symptoms you think the stress might be exacerbating, such as mood problems, digestive issues, sleep changes, etc. If you find that stress is aggravating your pain, learning some new coping mechanisms might help you manage times of stress.

Weather. Changes in weather, particularly changes in barometric pressure, are scientifically shown to have a significant effect on pain, particularly if your pain is inflammatory in nature. As the barometric pressure drops, there’s less air-pressure around us compressing our bodily tissues, so tissues that are prone to swelling will swell. Conversely, weather systems of increasing pressure can help relieve some pain. If you notice that changes in the weather seem to accompany a change in your pain level, tracking the barometric pressure, temperature and relative humidity is a fairly thorough way to record patterns. If you’ve kept a pain journal before and would like to compare your pain levels to the weather you can do so here. Some ways to deal with weather-related pain changes are by applying compression to areas prone to swelling, keeping warm, and gentle exercise to encourage movement of fluids in the body.

Food. Food sensitivities are extremely individual, but can be an important factor in pain management. Some people might find that particular foods actually trigger a pain flare; for example, people with migraines often find that consuming MSG directly triggers an episode. Other times, it may not be noticed that a type of food causes increased pain symptoms until you eliminate it from the diet; some have found this true of things like gluten, lactose or food dye. Keeping a dietary log along with your pain journal can help clue you in on any correlations between your food intake and your pain. Always check with your doc before starting any sort of restrictive diet!

Activity. The relationship between pain levels and activity is often complex; too much or too little can cause your pain to increase. Although it often seems the intuitive response to pain, remaining sedentary can cause the body to stiffen up and muscles to lose strength, resulting in even more pain. Activity is imperative to well being when living with chronic pain because it releases feel-good endorphins , but activities that are too strenuous may cause pain to increase. By writing down what exercises and activities you preform along with your pain level, you can begin to notice what exercises leave you feeling better and which ones leave you feeling worse.

Sleep. Sleep is the time that when the body repairs itself, so it’s no surprise that sleep affects pain levels so deeply. Not all sleep is created equal; deep restorative sleep requires the sleeper passing through 5 stages of progressive relaxation. When sleep is interrupted, the body must try to start the cycle over again. If you’re tracking your sleep, some things that are beneficial to write down in the morning are: how soundly you feel you slept, how many times you woke up during the night, and how easy it was for you to fall asleep. Don’t worry too much about tracking specific times, since looking at the clock often causes anxiety over getting to sleep—totally counterproductive.

Acute Illness & Injury. One of the cruel realities of living with chronic illness is that we still have to suffer acute illnesses, too. We may describe our illness to others by saying, “Every day feels like the worst flu you’ve ever had” as a way to shed perspective on how uncomfortable we are. So when a chronically ill person experiences a terrible virus, the results are basically like getting hit by a Mac truck; incredible pain. Even minor infections can sometimes play a huge part in increasing pain and fatigue. It’s the same with acute injuries; if you experience an injury in a place that already experiences pain, it can cause your pain levels to skyrocket. Interestingly, sometimes an acute injury can help distract from chronic pain in other places. Tracking these acute problems can help explain pain fluctuations.

Saturday, December 21, 2013

The Quiet Joints the No One Ever Knows

 One of the misconceptions commonly faced by people who suffer from autoimmune arthritis is that it is exactly the same as osteoarthritis, the wear-and-tear form of arthritis which mostly affects people in old age. The fact is that autoimmune arthritis is a systemic disease which causes your autoimmune system to attack and destroy your joints; it's not known what causes it, but it certainly isn't related to wear-and-tear. The mechanism of attack is different too-- autoimmune arthritis causes blood to flood the area and cause a lot of swelling, rather than the mechanical rubbing of cartilage caused by osteoarthritis.

Something that many people don't realize about autoimmune arthritis is that it isn't picky where it will take up shop during a flare. Technically, it can affect even non-articular organs, like your heart and lungs, but it has a preference for joints. Any joint will do. Of course autoimmune arthritis affects the joints that are commonly attacked by osteoarthritis, like knees, hips, and hands, but it can also manifest itself in joints that are more exotic. It can manifest in joints most people don't know even exist.

Here are some out-of-the-way joints that can be affected by autoimmune arthritis:

Temporomandibular Joint (TMJ). 

Anatomy of TMJ. Source.
When you meet with a friend to go out for dinner and chat, you might not realize that there's a joint working overtime: the jaw (or TMJ).  Talking, chewing and brushing your teeth are all very basic, necessary life-tasks that require motion in your TMJ. They all become very difficult to do when arthritis flares in these joints. When inflammation sets in, a person can experience clicking, popping, and locking of the jaw, as well as intense pain.

Sternocostal joints. 
Anatomy of the Rib Cage. (It swells where blue meets yellow). Source.

Generally, we tend to think of our rib-cage as being a pretty solid and immobile, but there are actually several joints that help facilitate twisting, turning, and the in-and-out motions necessary for breathing. In fact, these are some of the most-used joints in the human body which never get a break from moving since we must continue breathing throughout the night, while most joints get a chance to rest. Unfortunately, it's a playground for autoimmune arthritis. Inflammation of the sternocostal joints is called Tietze Syndrome. (When inflammation isn't remarkable, the term costochondritis is often used). Sufferers experience extreme pain and difficulty breathing, wearing a bra, or moving their torsos.

Inner Ear. 
Anatomy of the Human Ear. Source

Some people may be surprised to learn that our hearing is actually controlled by the motion of joints located in our ears. Very simply, the bones in our ears get hit with wavelengths from the things around us and clang together like tuning forks, vibrating noise signals into the brain. So when the joints in your ear start getting attacked by your immune system and swelling up, the tuning forks don't have room to vibrate and your hearing can run amok. Inner ear swelling can also cause tinnitus (ringing in the ears) and balance problems. This condition is sometimes referred to as Autoimmune Inner Ear Disease

Anatomy of the Throat. Source.
The process of speaking takes places when we make our vocal chords vibrate together. What facilitates this vibration? You guessed it, a joint. The cricoarytenoid joint, to be specific. In a healthy throat, the cricoarytenoid joint helps make the vocal cords move up, down, and together, which is what allows us to change the pitch in our voice. When the joint is attacked by autoimmune arthritis, it inhibits these motions, and can cause hoarseness, difficulty breathing, and pain. Kelly Young has a great article about cricoarytenoid arthritis over at her website, RA Warrior.

Look at how many vital life processes, like breathing and eating, are made difficult and painful due to autoimmune arthritis.