Volunteering in Belize 2 years post-diagnosis (2005).
Great Wall of China, 2013 (10 years post-diagnosis).
I recently realized that I have lived with rheumatoid arthritis (RA) for ten years, or roughly a third of my life! In that time I’ve graduated college, travelled to 12 different countries, lived in 3 states and travelled to/through over 15, started swing dancing, got 2 kittens, earned a Masters degree in occupational therapy, got married, bought a house, and more.
In honor of my diagnosis anniversary, I’d like to share how RA has (and hasn’t) affected my life over the last 10 years.
Understandably, most people assume that joint inflammation and/or pain has the biggest impact on the life of someone with RA. However, if I really look at how my life has changed due to my diagnosis, the impact extends far beyond the physical. Using the Occupational Therapy Practice Framework as a general guide, I’ve created a handy pie chart which shows the 7 areas of my life that have been most affected by RA. I will explore each in detail below, starting with the top right.
1) Physical Effects of RA:
For those who don’t know, RA is an autoimmune disease. In RA, your immune system mistakenly attacks the lining of your joints, which has a cascade of effects beyond joint inflammation (“arthritis”), pain and degradation. Although arthritis is in the name because joint inflammation is a main effect, RA is in fact more similar to lupus than osteoarthritis, which is caused by joint cartilage breakdown over time. RA has “systemic” effects on other organs, such as the heart, lungs, and vascular system (explored in detail at the link above and here).
On good days, I feel like THIS!
So, what has that meant in my life? Well, my levels pain, inflammation and fatigue have varied vastly over the last 10 years. I’ve had years at a time with absolutely no symptoms (“medicated remission”), but I’ve also had a couple of “flare-ups,” where pain and inflammation have increased to the point that I have to change my medication regimen and how I approach tasks.
On a bad day, my foot feels like this.
On the average day, I feel a dull ache in my “distal” joints (farthest away from the core – think fingers and toes, not shoulders and hips) which is slightly worse in the morningand at night. I intermittently have cricoarytenoid arthritis, or inflammation of a small joint in the throat, which results in dyspnea. Dyspnea means difficulty breathing or an “unpleasant awareness of the work of breathing.” Overall, I have been very fortunate to respond well to my medication regimen, which has kept my inflammation at bay.
I wear glasses to minimize eye inflammation.
Despite my mild level of daily joint inflammation, I do experience some systemic effects of RA, including chronic eye inflammation, gum inflammation (leading to hefty dental bills), non-iron responsive anemia, occasional fatigue, and some gastrointestinal symptoms that may or may not be related to RA depending on whom you ask. The gastrointestinal issues have led me to adopt a nightshade and gluten free diet.
I also experience medication side effects, including increased risk of infection (which means I must be very careful to wash my hands and practice other “infection control” measures), digestive issues, and fatigue.
In summary: while I’m very lucky to respond well to medication, my life has been affected by the direct and systemic effects of this disease and medication side effects. The hardest aspect for me is not managing my physical symptoms but rather the unknown. If I’m currently in mild pain, next week will I have a huge flare-up, or will I be in medicated remission for the next 10 years? No one can answer that, which makes life planning difficult. Then again, we all ultimately don’t possess answers regarding our physical future…but more on that later.
2) Daily Routine: The Why, and the How.
My physicians prefer my RA be controlled 100% through medication, which would allow me to live a completely “normal” life without making any modifications. However, as an occupational therapist I prefer to tweak my daily activities so as to minimize stress on my joints.
The way I see it, my joint inflammation at any given moment is partly a result of my immune system attacking my joints, and partly a result of the additional stress I put on them as I engage in daily activities. Medication addresses the former cause of inflammation, but not the latter. I can control the way I approach daily activities, so I owe it to myself and my long term joint health to do so! Joint protection has become a part of my daily routine at almost a subconscious level. Here are just a few of the ways I approach activities differently to prevent further joint damage:
Dressing: I take my RA into account when selecting clothing. Typically I avoid shirts with lots of tiny buttons, as they involve lots of repetitive motions of the small hand joints. I also am extremely selective with my footwear, with the dual goals of minimizing stress on my foot joints and making the shoes easy to put on and take off (see my previous post on RA-friendly shoes, where you will discover my obsession with Danskos!).
Stovetop cookies…these are actually less efficient than baking cookies in the oven, but this is the best “kitchen action shot” I could find :-)
Cooking: A few simple kitchen modifications I’ve employed include: using an electric can opener rather than manual, using a smaller Brita water pitcher rather than a larger/heavier one, purchasing very good/sharp knives to miminize the amount of force I must use to cut things, using an electronic food processor and kitchen aid rather than manually stirring food, using “mass movements” (shoulder/elbow/trunk) to open items rather than relying on the small hand/wrist joints whenever possible, and asking for help with lifting large/heavy items. When I am lifting any object in the kitchen, I follow the basic rules of joint protection.
Computer/phone use: I take frequent stretch breaks at the computer, and I always use a mouse rather than a trackpad because mousing puts less stress on my MCP joints (knuckles) than using the trackpad (and the MCP joints tend to be most affected long term by RA). I’ve also started using talk-to-text programs when I’m not in public, such as Siri. I find it’s much easier to dictate a short message this way, plus it’s way faster than trying to finagle with the small keyboard on the iPhone!
3) Financial and Health Management Adventures with RA
Health management and financial costs affect everyone with chronic illness, regardless of whether one is experiencing symptoms at the moment. I’m sharing these costs (financial and time burdens) not to complain, but just to paint a realistic picture of what managing this disease entails. RA appears to cost me 26.8 to 74 hours of time per year, and $2800-$8000 per year depending on my insurance (note: the financial costs are just what I directly pay; my insurance company is paying over $20,000 a year for Enbrel or Remicaide alone).
4) Social & Emotional Effects of RA:
As marriage became more of a real prospect in my mid to late 20s, I found that anyone entering into a romantic relationship with me would consider the potential lifelong effects of the disease. My impression is that the disease itself was seen as a negative, but the way I managed it was seen as a positive. I also think I self-selected partners who shared my view, which is that you never know what physical or mental condition someone might develop when you make that lifelong commitment. We all know that we could be hit by a car tomorrow and our whole lives could change, so putting extra stock in the physical when making romantic relationship decisions is unwise. That being said, I think that when you enter into marriage after having experienced health issues, the phrase, “In sickness and in health” certainly carries more weight. In fact, the only time I became tearful during my wedding ceremony was when saying those words!
Regarding family and friend relationships, I’ve had wonderful support from both groups. The only small point of friction has been when I have felt peer pressured to stay up late, over-exert myself and not give my body the rest it needs. My peer group largely has subscribed to the “I’ll sleep when I’m dead” approach, which simply doesn’t work for me (or most people with an autoimmune disease). My body starts shutting down when I get less than 8 hours consistently a night. I’ve learned to be assertive with this, and deal with “FOMO,” or “Fear Of Missing Out.”
KAT-FISH camp for kids with arthritis, 2010 (I selected a photo w/o kids’ faces to protect their privacy).
On the positive side, RA has paved the way for me to make some additional friendships and relationships. I’ve met other patients through the Arthritis Foundation, at the summer camp in the northwest as well as other volunteer and advocacy adventures. I’ve also met some amazing folks through social media and blogs, such as RA Chicks, RA Warrior, Creaky Joints, and RA Guy. Lastly, I’ve recently made connections through Tumblr with some inspirational people through Arthritis Humor.
Emotionally, the hardest times for me have been when I’ve had unexplained symptoms. This happened the full 2 years before I got diagnosed and has reoccurred a few times since then. As someone who prides herself at the ability to get to the heart of the matter, I’ve found it frustrating when I can’t figure out what is causing a particular symptom and how/when it will go away. I also have felt anxiety about the future, due to not knowing how RA will affect important life roles that I hope to have such as being a mother someday. Will I, like some women with RA, go into complete remission during pregnancy but then have a huge flare-up after giving birth and barely be able to hold my own baby? Or will I go into lifelong remission after having a child, like my great aunt did?
The unknown for me is probably the very hardest aspect of this disease. If I knew that I’d have X effect for life, I could habituate my mind and approach to it, but unlike a situation such as a complete spinal cord injury where the prognosis is pretty clear cut, autoimmune diseases have varying courses for each individual. The upside is that I have the potential to feel great in the future, but the downside is that I will always have to handle the unknown and lack of clarity on what is happening in my body.
5) School & Career w/RA:
I always enjoyed working with kids! Pictured here is my sweet nephew Sammy.
During the first 6 years of my diagnosis I explored some truly amazing careers, including: working in a private school for children with severe developmental disabilities, program development at an international photography and youth storytelling nonprofit, and organizational development and training at a top 10 academic medical center in Seattle.
During that time, I did a ton of soul searching about what career would be the best fit for me long term, and RA did play a role in my decision making. I decided I wanted a career where my primary purpose was directly helping people (individually or in small groups). The career had to be flexible enough that I could work in a variety of settings, regardless of my potential joint inflammation.
OT annual conference – meeting up with another OT with RA!
Occupational therapy emerged as the perfect fit due to the large scope of practice and variety of practice settings. It also has a lot of part time work availability, which appealed to me as I’m hoping to work part time when I have kids. Additionally, OT is an intrinsically optimistic profession. We will rehabilitate or compensate for any physical or mental condition so that our clients can “life life to it’s fullest.” OTs want to maximize the amount of function one can achieve despite any illness or injury, and that philosophy appealed to me as it’s very inclusive of a diagnosis such as RA.
As an OT student, I did experience some occasional pain from handwriting. However, my vast experience with the health system and my own journey as a patient generally have a positive effect on my school and career.
One positive effect of my diagnosis on my career is that I can empathize with my clients’ interest in knowing “the answers,” and their frustration when they eventually discover that no one knows them. People can tell you what is most likely to happen, but no one in the health or education system is a fortune-teller. I really identify with my clients’ (or family’s) frustrations over how difficult it is to make decisions off of what sometimes feels like incomplete information. Once you understand how complex the human body is, it seems self-evident that no one can give you the answers, but I vividly remember my experience of the healthcare system before I became a provider, and the profound disappointment I felt when I was confronted with this reality. I try to really acknowledge this aspect of my clients’ experiences and validate their concerns.
6) Hobbies & Travel with RA:
My choice of hobbies has certainly been affected by my diagnosis. I used to run almost every day, starting in high school through to a couple years after my diagnosis, but eventually decided to try forms of exercise that would be less strenuous on my joints: swing dancing!
Swing dancing with my first partner, Brian Gish!
In my video “Why I Dance,” I shared how dancing grew into a huge part of my social life. I have to be careful about certain moves which cause strain on my small hand joints, but overall I’m fortunate to be able to take part in this wonderful community despite RA.
Swing dancing is a great example of how RA took something away from me, but I discovered something equally meaningful in its place. Do I miss running and soccer? Absolutely, especially on clear, beautiful Seattle days. On a purely physical basis, I prefer the endorphin release of soccer or running to swing. However, when I look at the whole package of the activity (with the social and musical elements), the trade-off is without a doubt worth it.
Now, onto travel. Yes, I have been to 14 countries since my diagnosis: Belize, Fiji, New Zealand, Japan, China, India, Turkey, Czech Republic, Germany, Belgium, Netherlands, Ireland, England, and Canada. Phew!
Mom delivering my Enbrel in San Ignacio, Belize!
The biggest effects of RA on my travelling are the prescription and health management aspects. My first international trip post-diagnosis was to Belize, where I volunteered for a great organization called Cornerstone Foundation. I was only planning on staying for 3 weeks but I ended up staying 3 months, which meant that I needed additional medicine. I was on Enbrel at the time, a twice-weekly self-injection medicine which MUST stay refrigerated. My mom graciously helped me research how to ship it, but found out that it is illegal to ship things on dry ice to Belize due to drug concerns. So, guess what our solution was? My mom took advantage of low ticket prices and decided to bring the medication to me – now, that’s what I call customer service!
The drama wasn’t over at that point, however – during my last 2 weeks in Belize, there was a strike by the electrical supplier to the entire region, so we had no electricity to run the refrigerator! Luckily I was able to keep my medication cold, but it just goes to show some of the difficulty of travelling with RA.
New Zealand for our honeymoon, 2012.
During my other travels, I sometimes had to simply skip a week or two of medication. I was lucky not to experience any adverse affects with this approach. I also had to get “vacation authorization” to pre-fill extra amounts of my medications for longer trips.
Since I switched to Remicaide, the infusion-based medication which is administered every 6-8 weeks, the biggest travel concern has been coordinating my travel dates so that they do not conflict with my medication schedule. For example, I had to get an infusion the week before my wedding so that I would be covered through the honeymoon. This has also affected my current travels to China, as my husband is there on an extended business trip. Luckily, my infusion schedule overlapped with a few weddings I wanted to return home for anyway! I think that spending extended time abroad would be anxiety-provoking to me, from a medical standpoint, because I have found that errors or confusion are more likely each time you introduce a new provider to the mix. However, short trips for me have been manageable with some work upfront.
7) Philosophical Effects of RA: The Biggie.
1997, Mercer Island High School. I’m trying to save the ball from going out of bounds.
For years, I believed that if I treated my body as a temple, I would reap the rewards of my efforts. I ate well, avoided recreational drugs, exercised vigorously daily, and as a result had a body that operated smoothly and efficiently. I ran a 5:30 mile, weight lifted 5x/week, and never subbed out of my high school or college soccer games (clocking in 90 mins/game).
Experiencing my body break down in the absence of anything I was willfully doing felt like a double betrayal: it was a betrayal of myself BY myself (there wasn’t even an outside virus to blame!), and it was a betrayal of a philosophical system I didn’t know I had, which is that I can protect my body from harm by doing “the right things.”
I know now that my years of good health were partly a result of my actions, but also a result of good luck. My baseline state of good health enabled me to maximize my fitness and do great things, but I wasn’t in control of that original baseline state. In my gut, I suppose I knew that I was lucky to be in good health; I had seen other athletes fall victim to injuries and seen friends/family fall ill to various diseases through no fault of their own. There is a transition period, however, between knowing your body is not invincible and accepting it.
The world is big and awesome and the only thing I know is that I’m going to die, so I might as well do as much good as I can while I’m here! Whee!
So, what or who is to blame when the body betrays the body? In my own belief system, there was is no god or greater power or force to blame or help make sense of it. There isn’t a “reason” or meaning to my diagnosis; it just is. All humans are mortal, and all human bodies are subject to disease and illness. There are certainly preventative measures we can take to minimize risk, but there are no surefire ways to prevent yourself from all possible illnesses and injuries.
My diagnosis led me to confront the infallibility of my own body, which in turn made me confront my own mortality. The realization that “my physical body is not completely under my control” naturally led to “my physical body will eventually not work anymore.” Accepting my mortality has been crucial for giving me a strengthened sense of purpose and urgent desire to make a meaningful life. The graph below outlines the interplay of these factors.
How various factors (including RA) lead to recognition of my mortality, which lends a sense of urgency to my life.
The fact that I am going to die someday gives immediate perspective to any situation. My “bible” of sorts is a combination of “Man’s Search for Meaning” and “Tuesdays with Morrie.” Both of these books deal with the concept of death straight on, and while Morrie is religious, the basic truths he utters are equally applicable to agnostics and atheists.
“Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die, it’s the positive that you understand you’re going to die, and that you live a better life because of it.” -Morrie Schwartz, in Mitch Albom’s “Tuesdays with Morrie.”
Working with Tibetan refugee children in northern India at “TCV: Tibetan Children’s Village,” 2007.
Confronting my mortality and the mortality of all humans has been the compass around which I live my life and make decisions. It’s the only thing I know for sure. I am alive now, I will die someday, and I desperately want to leave something positive for the world behind, to make my life worthwhile. There is no inherent meaning to my life, the only meaning comes from the good (or bad) actions I choose to take during my limited time on earth.
Sure, I knew I was going to die on some abstract level before I got diagnosed with RA. But there is something about a stark, black and white diagnosis that makes the abstract concept of mortality more real. This is perhaps the greatest gift that has arisen out of my diagnosis.
In conclusion: the effects of RA have extended far, far beyond the physical in my life. My diagnosis affects everything from micro-elements of my life (such as how I approach simple daily living tasks in the kitchen) to macro-elements (such as my sense of purpose and acceptance of my mortality). I hope that this exploration has helped the reader see RA as much more than simply autoimmune-caused “joint inflammation!” I’d love to see charts of other peoples’ top life effects of RA – feel free to share your experiences in the comments section.