Silly Silver Linings

Chronic pain is an ugly, black rhinoceros of a cloud, like in Tim Burton's adaptation of Roald Dahl's, "James and the Giant Peach." Pain clouds our perspective, separates us from our loved ones, and sometimes forces us to the pits of despair. That's just what unrelenting pain is like.

Every cloud has a silver lining.

There are lots of big-ticket lessons that can be learned quicker due to dealing with chronic pain, but none of them necessarily required suffering pain to learn. Compassion, advocacy, empathy, activism... chronic pain may lead you there quicker, but there are plenty of other ways to get there too. It’s impossible for me to say that I haven’t learned a lot from my disease, but I certainly could have learned most of those things vicariously.

However, there are some things I absolutely would never have learned if not dealing with autoimmune arthritis. I never would have needed too. Silly things. Practical things. They certainly don’t make up for a life of pain, but here are some of the silver linings and lessons I never would have had without chronic pain.


1. Chronic illness makes you amazing at filling out forms. I have filled out so many forms since getting sick that I can figure out and complete almost any form like a machine. Sure, maybe there are other ways to get good at filling out forms, but by and large, healthy people don’t ever experience the variety and depth of forms that sick people do. Not only are there the medical history forms (which each doctor wants done individually, even though many medical history forms ask exactly the same question), personal symptom forms, and the corresponding insurance forms, but also a myriad of government forms if you need to utilize any public assistance. These forms then force you to familiarize yourself with all of the tax forms. There are accommodation forms if you’re physically able to work or go to school, disability forms if or when you’re not.

2. Having hand pain has taught me a million different ways to manage writing. Particularly my signature. I can give a passable signature using either hand, with my fingertip, with my fingers but without moving my hand or wrist and using my shoulders, with a pen stuck between any of my fingers, and occasionally with my right foot. I’ve learned three different types of computer dictation software, and experienced what it’s like dictating to a real person. I’ve tried non-standard keyboard configurations to try and help make typing easier (though my mind can’t escape QWERTY). Never would have tried any of these if I didn’t have to, which goes hand in hand (pun intended) with the filling out forms thing.

3. Having a cane means you always have a great resource with you. This would be even more true if you carry a sword cane, but even the standard aluminum ones (like I have) are pretty darn handy. For tasks that don’t need much dexterity, a cane easily doubles your reach—perfect for sliding things to you when you need them. It can be rolled across sore muscles for a cooling massage. It’s a great tool for stretching. It makes me feel safer knowing I could use it to defend myself. It kills spiders.

4. The health-related contents of my purse can save people in emergencies big and small. After years with no doctors really helping me, I’ve developed a compact OTC arsenal that I keep with me: Excedrin, aspirin, ibuprofen, Benadryl, antacids, etc. I always have snacks and water because they’re needed to take medication with. Also on deck are hand sanitizer, alcohol wipes and a rubber glove, because periods of being immunocompromised leave you terrified of germs. Portable hot-packs meant for outdoorsmen because they’re great for sore joints. Matches for after tummy troubles. Basically, my daily needs are what other people need in a disaster.

5. My body has become an almost entirely accurate meteorologist. It can predict fluctuations in barometric pressure and humidity with astounding precision. It always lets me know when to bring a jacket, or an umbrella. Or if an event is going to be rained out. I wish there was a way to market this knowledge to the TV meteorologists; the locals would be happier and I could use the funds!

Ambivalence, Negativity and Giving Thanks

This time of year with fellow American’s celebrating Thanksgiving, swirling around on the internet and in popular culture is the question, “What are you thankful for?” It’s an important question to ask, and practicing gratitude is a great coping mechanism. Reminding yourself of all the privilege and joy you’re thankful for on a regular basis can be a great tool towards accepting a life with chronic pain. But I’ve noticed that a problem that seems to occur this time of year: people weaponize thankfulness.

When someone is having a hard time, people might reply, “Oh, but you have so much to be thankful for,” as if it is impossible to simultaneously be thankful for what you have but remorseful at what you don’t. Others use thankfulness to launch into “inspiration porn,” saying something like, “Sally can’t get out of bed, but every day she says how thankful she is to be alive. You can get out of bed, so you should feel more thankful.” In turn, this makes people who are suffering less apt to complain and more likely in internalize future problems. It’s not uncommon to hear, “Oh, I know I shouldn’t complain, I’m lucky because of x, y, z.” This attitude disparages the lived experience of those who are suffering. I posit that there is no mutual exclusivity between being thankful and being morose, and both experiences are just as valid and worthy of discussion.

Sometimes you can be thankful and bitter about the same things. Though it’s often lost in common usage, the term “ambivalence” means the experience of holding simultaneous contradictory opinions about a particular event. Ambivalence is a common experience when living with chronic illness. When a particularly side-effect laden treatment starts to make your illness feel better, there’s a deep ambivalence between relief that the treatment is working and resentfulness that it is necessary and so toxic. Embracing this ambivalence rather than trying to quash it is a necessary step in accepting the ups and downs of life with chronic illness versus searching endlessly trying to get “back to how it was.” Ambivalence is natural and normative.

I hope that you can find lots to be thankful for this Thanksgiving, but its okay if you can’t. It’s okay to be thankful for something and mad as hell at it at the very same time. It is okay to feel all of the things you feel, irrespective of the contradiction or politically incorrectness. It’s okay to be you, where you’re at.

Chronic in the Kitchen

Adequate nutrition is a vital part of maintaining one's wellness. Eating well is important for everyone, but it is absolutely integral to those of us whose bodies reject the notion of "healthy"-- putting in good food is the only way to stay afloat with chronically ill bodies. We need wholesome food to take with medications so they don't screw up our stomachs and our minds. Nutrients to help protect compromised immune systems. Foods that don't make us sicker.

The problem with this is that chronic pain can make cooking feel impossible. A lot of days, it actually is impossible; you can't make a flared body go if it doesn't want to. But that doesn't negate the need for a decent meal. Fortunately, there are some things you can do when you're feeling a bit more physically capable so that flares don't leave you stranded in a food desert. I can't tell you what types of food are good for your body, but I can offer some tips that help any chronically ill would-be chef.


Bring the workspace to you with a portable table. Some kitchen designs are all about efficiency, which is great for those of us with chronic pain, but many designs make inefficient use of counter space. This translates to more walking back and forth in the kitchen as you gather your cooking implements and your ingredients-- not good when every extra step is causing pain and fatigue. Cut down on these steps around the kitchen by using a sturdy portable card-table as your cooking home-base. Place the card table close to where you'll be doing most of the food preparation-- generally near the stove. Before you start cooking, put all your needed tools and ingredients onto the card table. Now when you're cooking, you'll be able to reach behind you to grab what you need instead of having to go across the kitchen.

Use chairs to work sitting down. One of the hardest things about cooking with chronic pain is that cooking so often involves hours of standing. Standing when you chop your ingredients, standing over the stove, then standing over the sink to clean up. All this standing can be mitigated, if not eliminated, by using a chair in the kitchen. Computer chairs work great because you can adjust the height to meet the needs of each station in your kitchen. Some tasks are a little awkward in the chair-- like dishes--  but having the chair to take breaks helps keep pain levels from spiking, even if you don't complete the whole chore sitting down. 

http://rejigdesign.com/11-modern-computer-chairs/

Cook huge meals and freeze individual portions. Remember when we talked about how cooking is impossible during flares? If you have leftovers in your freezer, all you have to do is pop a container into the microwave. And luckily, it's often easier to cook a bigger portion of a meal than a single serving. AllRecipes has a handy feature for its recipes which allows you to manipulate the serving size of a dish. Store (slightly cooled) leftovers in a freezer/microwave safe dish (I like glassware, but be sure not to over-fill!) There are lots of recipes out there for foods that freeze/reheat well to suit any diet plan. My personal favorite is manacotti and red-sauce; spaghetti sauce gets more flavorful as it sits, and the noodles are already cooked. Soup is also great in this regard, and you can freeze it into cute little bricks. Having a yummy, hot meal makes a flare a little more bearable. 

http://speckless.wordpress.com/2010/12/16/living-on-a-budget-1-freezing-food/

 
Have the right blade. Chopping veggies is a chore that sore hands anticipate with dread. It becomes a total nightmare if you don't have a decent, sharp knife. The sharper the knife, the less pressure you have to put behind it to make it work; this translates to less pain and impact on your hands. Find out which knife type feels best to you; personally, I find that knives with bigger blades are easier because I don't have to grip as tightly. Kitchen scissors are also much easier for me to use than knives because I can rely on the pressure of two hands squeezing rather than one rocking wrist.

http://www.bestkitchenknivesreviewed.com/best-kitchen-knife-sets

Break the work into chunks. To prevent yourself from getting too fatigued and sore from working in the kitchen, break your work into short, manageable stages and rest in between them. This is easier with some meals than with others, but the principal can apply to almost any meal. Take a break after getting everything together. Take a break after getting things cut up. Take a break when everything is mixed together. Do whatever you can to save your energy for when your food hits the frying-pan, when you absolutely must attend to it. When baking, you can take hours or days between some steps while you let your dough chill in the refrigerator. And don't get down on yourself for breaks- always remember it's better that something come together slowly than not at all. 

Keep healthy grab-and-go food ready. There are times when you need food now. Maybe your blood sugar is crashing, maybe you need something to eat with your medication. Whatever the reason, grab-and-go food is important to keep around. Of course a lot of this depends on personal needs and taste preference, but here are some grab-and-go foods worth considering.

• Almonds
• Plain yogurt with frozen fruit
• Hard-boiled eggs
• Meal-replacement bars
• Cereal
• Cheese and crackers with fruit

Life-Hacks for Chronic Pain

Life with chronic pain is hard. Pain can limit nearly every daily task one needs to accomplish in order to live a functional life. Even the little things, like showering or making food, are Olympic level tasks when faced with intense pain.  Life hacking refers to any productivity trick, shortcut, skill, or novelty method to increase productivity and efficiency, in all walks of life. Life hacks are supposed to make the world easier-- something those of us with chronic pain can certainly appreciate. There are lots of general life hacks that can help people irrespective of disability that can be found on the web. Lifehacker and Lifehack offer a plethora of tips and tricks, as does the life-hack tag on Tumblr or Pintrest.

But for those of us with chronic pain, things that most people don't need help with become fiasco's that need their own special tips and tricks. Here are some of my favorite chronically ill life-hacks.

• Make a hobby bucket. A hobby bucket is any closed or mostly-closed container that can house the stuff you need for he projects that you like to do. It lends well to fabric and yarn craft, art supplies, scrapbooking or study-stuff, etc. Anything smallish and not super fragile that will keep you entertained. The benefit of a hobby bucket over other types of organization is that your hobby bucket is made to follow you around the house. It's closed, so it can flop over on the bed or survive that accidental fall between the couch and the desk. A bucket with a hard plastic lid makes a great tray-table to use for work space if you're someplace without a fixed surface, like in bed. 
• Make warm rice buddies. Rice buddies are portable, microwavable heat-packs, and they are a godsend for sore joints and cold feet alike. They stay warm for a long time, and provide a nice moist heat, or, you can keep your rice buddy in the freezer for a cold pack that never feels so cold that it hurts like regular ice packs. They're also incredibly easy to make and to customize; it's just plain white rice (regular, not instant!) sewn inside any sort of fabric sachet. The sachet can be as simple as a plain tube-sock, or can be a beautifully patterned pillowcase. If you'd like your rice-buddy to smell like something other than white rice, you can add essential oil or tea-leaves into the rice before sewing the sachet closed. More detailed instructions available at Instructables.
•  Used closed containers. Sort of in the spirit of the hobby bucket, using closed containers for everything is a great way to avoid messes, particularly if chronic pain weakens your grip or challenges your balance. Use water bottles instead of glasses or cups, and Tupperware™or another similarly locking dish instead of bowls to prevent your drink or dinner from ending up all over the floor. It's especially thrifty to save and wash the containers that come into your house already with product in them (i.e. sour cream, cool-whip, etc) Great for getting that cereal from the kitchen to the table without simultaneously getting it all over you.
• Shower Seats. Showering can be near impossible when you're battling pain and fatigue. Standing for long enough to get clean is often not an option. This is where a shower seat can save you. There are specially made shower seats available in the assistive device section of many drug-stores, or you can use any all-plastic stool you find. Put the shower seat in the shower, turn the water on, then get in and sit down-- be careful when first sitting, because your seat might slide around a bit. Now you're showering in comfort.
• Utilize opiate potentiators (with your doctor's approval). Often, good management of chronic pain involves using prescription pain medication. However, tolerance and overuse are big concerns held by doctors. One of our duties as a pain patient, then, is to work with our doctor to find the minimum amount of pain medication that we can take and still live our lives. One tool in your arsenal of using less could be the use of an opiate potentiator-- a non-narcotic substance that helps increase the effects of opiate pain medication. This is something you must talk to your doctor about before trying, but if approved, they can be used to help ameliorate your pain on very bad days. Some common potentiators are acetaminophen, caffeine and ibuprofen.
• Use speech to text. When your hands hurt, typing is frustrating at the best of times and impossible at the worst. This limits computer usage, and can leave you feeling isolated, bored and lonely. Luckily, both PC and Mac computers come with speech-to-text dictation tools right out of the box. This software allows you to speak into your computer's microphone and prompt the computer to both do commands and type for you. There's something of a learning curve as the computer learns to recognize the sounds of your unique voice, but they're pretty simple for the user from day one. Learn to access speech-to-text on your PC, or on your Mac. (If you're running Linux, you don't have an embedded dictation software, but an external product is available here.) 

How to Live On Your Couch (And Still Feel Productive)

The unfortunate reality of many invisible illnesses is that they lay you out, flat. Pain, fatigue and other symptoms can mean a huge allotment of time can only be spent on the couch. Many illnesses cause disability to the extent that it hampers one's ability to hold a job-- the couch becomes the main resting perch as days melt into each other until the next medical appointment. Pain holds you hostage, and it's easy to let innumerable couch-locked days pass you by in a fatigued stupor. But this cycle of nothingness can breed depression, loneliness, and a feeling that you're wasting your life.

Obviously there are times when we don't need to be on the couch, and all of us with chronic pain take those days and run with them. Conversely, there are days when couch-productivity is going to be nill-- days when the pain is 9 out of 10 high and you're incoherent, there's no way you should even try to do more than exist through it. But many days, when the pain is high enough to trap you but you've still got a modicum of mental clarity, it's possible (but not always easy) to be really productive while sitting on your couch. Here are some of my favorite (thus necessarily, free) resources to help you learn, create, and better yourself from the pain-addled discomfort of your davenport.

1. That college class you always wanted to take, but never had time to fit in your schedule? Chances are, you'll be able to find it on iTunes U. From the iTunes Store menu in iTunes, there's a link for iTunes U in the upper right corner. From there, an interface introduces you to a world of totally free college lectures and courses. Many big-name universities (think MIT, Harvard, etc.) have a plethora of classes ripe for the listening. Some come with video or a PowerPoint, others are simply audio tracks. iTunes U is a great way to enrich your brain from your chair when you're not capable of much else.

2. The great Classic novels that you always felt you had an obligation to read are available from Project Gutenberg. Like their namesake, Johannes Gutenberg, father of the printing press, Project Gutenberg's aim is to help spread the written word to the masses. These eBooks are free (at least in the US) because their copyright has expired. They also offer a number of free audiobooks, read by person or by computer, if reading isn't an option for you.

3. Learn some of the peer-reviewed scientific research for your medical condition through the National Institute of Health's research database, PubMed. When you really want to go to your doctor with specific research about a symptom you're experiencing, this is the place to get it. Knowing more about your condition is empowering, but some private websites have a heavy bias and can present you with inaccurate information. The scientific community helps guard against inaccurate information by presenting studies to a large group of scientists who can all help verify the results and validity of the study. If it passes the muster, it gets put on PubMed. PubMed is also invaluable for seeing what sort of research your doctors may be involved in-- you just search their name. This can help identify what areas your doctor specializes in and often a general feel for their preconceptions about patients.

4. Become a master in retouching photos and basic graphic design with the Gimp. "Gimp" stands for GNU Image Manipulation Program, which is a long way of saying "Linux-based free photosho0p." The layout is a bit more rudimentary than the proprietary image manipulation software, but still has all the same capabilities. For those who don't know where to start, there's a plethora of websites that offer tutorials, like Gimp Tutorials and Gimpology. 

5. Explore the universe through NOVA documentaries provided by PBS. There are documentaries covering a wide range of interests, all with interviews and research from top experts. Episodes are usually about an hour, and packed with good knowledge. They're fascinating, often visually stunning, and allow you to just sit back and absorb the information. Perfect for days when you need something intellectually satisfying but really can't do much at all.



P.S. Apologize for general lack of online presence. My illness has made it hard for me to do much typing. I started this post in August-- phooey on me for telling you all about productivity!

5 Things I Wish I Could Tell People About My Invisible Illness

 Rheumatoid Arthritis: you don't "get it" until you get it. This is a phrase shared within the rheumatoid patient community to explain our interactions with able-bodied people. It can easily be applied to invisible illness in general; those who aren't dealing with it simply do not understand the realities of your chronically ill world. When people see brief glimpses of your disease, say on Dr. Oz or a new pharmaceutical commercial, they often believe they've gathered a true understanding and unique insights into your illness which they simply must share with you. Dealing with rheumatoid arthritis it's particularly challenging when people do not understand the difference between "wear-and-tear" osteoarthritis and inflammatory autoimmune arthritis. The former can be treated with aspirin, the latter attacks your internal organs and kills; yet people constantly confuse the two and offer rheumatoid arthritis sufferers suggestions for osteoarthritis pain.

After 7 years of living with chronic joint pain caused by autoimmune arthritis, I've learned that it's best to be as tactful as possible in dealing with people's questions, comments and concerns about my disability. Most people who offer advice or ask questions are doing so out of concern, and genuinely want me to start feeling better; they don't understand that I've answered the same questions and comments a million times before, that their anecdotal evidence isn't remotely valid as science, and that I'd really rather focus on what I can do instead of what I can't. Because most people have only the best intentions, I try to listen thoughtfully and brush people off as gently as possible, but sometimes I wish I could really tell people where to go.

In the spirit of catharsis, I figured I'd share some blunt-ass things I wish I could share with people so they could start really understanding my invisible illness.

1. If there was a diet that could cure my disease, there would be scientific proof and patients would be singing from the rooftops. Certainly there are some conditions where diet has major implications in health (gluten intolerance in those with Celiac disease, for example) but for most illnesses, there's no one specific diet that will cure you--or even help your symptoms. Usually, people try to tell me about the latest fad-diet that's made it's rounds on Dr. Oz. They talk vaguely about "inflammation" and "anti-oxidants," and make me promise I'll try the diet. Oftentimes, when I'm really desperate, I will try it, often at great personal cost, often sacrificing true nutrition. I've done extended trials with diets including: vegetarian, vegan, gluten-free, soy-free, raw-food, and fasting, and haven't noticed symptom improvement with any dietary changes. What I did notice is that life is a whole lot less fun when you're constantly concerned with what's going in your mouth. Food is one of the pleasures afforded to my crippled body, and I'm a believer that (barring allergies) no food is hurting me in moderation.

2. When I say I need to leave, it means I need to leave. Really. It doesn't mean I just need to sit down for a minute. It doesn't mean I just need a break. It shouldn't require me explaining why, exactly, it is that we need to leave. It means I need to get home now, and I need you to help me leave. Many aspects of my chronic illness aren't pretty: medications have left me with a very uneasy digestive tract, joints get filled with blood, I develop rashes... and I don't want to have to explain any of these to more people than I need to. One of the most dehumanizing aspects of chronic illness is that it strips away a person's privacy-- doctors need to know the most disgusting of physical problems, caregivers are required to help with intensely personal activities of living-- the last thing a chronically ill person needs is to lose this last bit of privacy and dignity in front of others. Our bodies require no explanation.

3. If those supplements could cure me, they'd be called "medications." Snake Oil is alive and well in the 21st Century, only today it's sold under the guise of horrifically expensive "dietary supplements" whose proponents claim treats everything from arthritis to cancer. It's incredibly presumptuous to assume that someone with a chronic illness can afford many of the outrageously priced supplements available on the market, and incredibly naive to assume that a product which has no scientific testing is somehow able to cure a life-threatening disease. My worst experience with a snake-oil salesman was actually with a Social Security Disability contracted psychologist, who insisted that my rheumatoid arthritis would be cured if I simply took these $200 a month gummy supplements, because his wife's friend's sister was "cured of her arthritis" after taking them. This guy then insisted I wasn't disabled because I was able to go to college and hadn't yet tried these supplements. Friend's moms and hairdressers have had similarly serpentine ambitions, and they are generally even harder to shake than the "try this diet" people. In reality, the FDA closely monitors the development of a medication, ensuring it's safety and efficacy; for supplements, they simply rely on the manufacturer to sell a safe product, and only step in once an unsafe supplement has entered the market and started making people sick. Similarly, they do not require supplements to list the ingredients or amount of ingredients contained within.

4. Your religion may comfort you, but please don't force it on me. People don't develop chronic illness as the result of a moral or metaphysical fault, and religious participation only helps patients who thoroughly believe it will-- much like a placebo. Forcing religious participation on those who don't want it (for example, in the form of the laying-of-hands, exorcism, or unsolicited public prayer) is tantamount to assault. Please don't ever insinuate that my chronic illness is part of your god's plan, or that it's a way to test/strengthen my faith-- these perspectives help further the belief that there's something morally defunct about people with chronic illnesses and that some moral change could make them better. This is patronizing. While I respect the rights of others to participate in any religious activity that doesn't hurt others, please don't ask me to subscribe to your dogma just because it will make you feel better. Similarly, while I always appreciate the kind thoughts associated with your prayers, they don't help me to feel any better physically, so don't expect them to. If you'd really like to understand my illness, please try talking about it to me instead of god.

5. No, I'm not too young for this cane. Canes do not have age-limits. Neither does chronic illness. My cane is a tool which helps my mobility and allows me to go places I otherwise wouldn't be able to-- that's it.  It is not a fashion statement or a ploy for attention. Age and ability simply do not correlate. My cane is, frankly, none of your business.

Disability Ethics and the Texas Filibuster

During the June 26 filibuster against Texas Senate Bill 5, senator Wendy Davis was required to stand and present about the bill's subject matter (access to abortion) for 13 hours without eating, drinking, sitting down, leaning on her podium, or going to the bathroom. The filibuster works on a "Three Strikes You're Out" policy, where if Senator Davis was found to be off topic or breaking the rules of the filibuster 3 times, she would be expelled from the floor. Twice, Senator Davis was challenged for going off topic, but one of her warnings came about when one of her colleagues-- Senator Rodney Ellis-- tried to help her tighten her back brace. Senator Tommy Williams is quoted as saying, "A filibuster is an endurance contest and it's to be made unassisted."

While Senator Davis was able to filibuster for an impressive 11+ hours, the Senate's refusal to allow her the use of an assistive device highlights an ableist paradigm in American politics.   I'm interested in the discriminatory nature of the Texas filibuster process, and how it could systematically prevent people with disabilities from participating in the political process. Such overtly negative reactions to the perception of physical weakness are indicative of the internalized ableism which many don't ever think about. What does physicality have to do with politicking, really?  The contents of one's character are vastly more important towards leadership than physical stamina. One of our greatest presidents, Franklin D Roosevelt, led the nation into war from a wheelchair. There's a great tradition of disabled veterans, like former senator Bob Dole, current representative James Langevin and current senator Tammy Duckworth, returning from war to enter the political sphere. Disability doesn't hinder one's performance intellectually, and in fact may cause people to pursue more intellectual ambitions once physical ones become harder to accomplish.