For This I Am Thankful
It’s easy to focus on the downsides of having rheumatoid arthritis. The pain, inflammation, and fatigue caused by RA can have a dramatic impact on one’s lifestyle and daily experience, and the unpredictability and variability of the disease can be infuriating. However, during Thanksgiving time I am making a concerted effort to focus on the aspects of living with RA for which I am thankful.
Modern Medicine. When I was diagnosed with RA in 2000, there were far fewer treatment options available. Biologics were new on the market, with only two that were FDA approved at the time. When my rheumatologist put me on Enbrel, it was so new that there was a brief shortage of the medication until an additional factory was made to produce more of it. Fast forward 15 years, and there are 10 biologic drugs that have been approved for RA.
While biologic drugs and other DMARDs are not a cure, they do decrease symptoms for many patients, and even send a lucky few into medically-induced remission. Rheumatoid arthritis affects individuals very differently, and a treatment option that works wonders for one patient may have little to no effect on another. Therefore, I am grateful to live in an age where so many treatment options are available. Enbrel worked great for me for seven years. When it stopped working, there were still other meds I could try. I experienced little to no benefit from Xeljanz and Humira, but Orencia injections help. I’m soon going to switch to Orencia infusions, in hopes that I’ll get additional benefit from having the medication administered directly in my blood stream. If I have to have this disease, I am fortunate to have it during a time when it seems there is always another drug or drug combination that can be tried.
Legislation. Likewise, if I have to have a disability, I’m grateful to live in a time where there are legal protections for people with disabilities. Before the Americans with Disabilities Act [ADA] became law in 1990, there was little recourse for people coping with disabilities in the work place. This legislation, and the amendments that have since been added to strengthen it, provide legal rights and protect against discrimination for people with disabilities. In the fifteen years I have lived with this disease in the workplace, I have only had to call on my ADA-afforded rights once. However, using the phrase “violation of my rights under the Americans with Disabilities Act” got me the Human Resources support I needed to be excused from an unnecessary and physically-taxing task that was required of me. I am so thankful to all of the people who fought to have this legislation passed, and to all who have since challenged violations via court cases to strengthen rights for persons with disabilities.
Simple Comforts. Thanksgiving is a time to take stock of the bounty of luxuries that we typically take for granted on a day-to-day basis. For example, it is a luxury that I live in a house with indoor plumbing, in which I can run a hot bath any time I like. A long soak in the tub is soothing for achy joints and tight muscles, and because I am part of the middle class of an industrialized society, I always have ready access to a hot bath. Furthermore, I have electricity to power my heating pad or to microwave a rice pack. While these treatments do not eliminate my RA pain, they do provide some measure of comfort that I would be denied if I had no electricity. Lastly, rest is one of the most beneficial comforts for painful, swollen joints. I am fortunate to have a comfortable bed in a safe location where I never have to feel afraid or crowded. Living with RA would be infinitely more challenging if I were living in impoverished or war-torn circumstances, and I am grateful for the comforts my privileged lifestyle includes.
Support Network. I am very fortunate to have many supportive family members and friends in my life. Just today I was given a loving lecture by a girlfriend who is concerned about how much I’ve been taking on, as she wants to make sure I’m taking care of myself in the process. I have a husband who helps me in ways large and small every day. I am aware of how lucky I am, as so many readers share stories of being without a personal support network.
Regardless of whether we have loved ones who are supportive of our health needs, we all have this online community where we can know we are not alone. Twenty years ago I was opening my first email account, and just beginning to use the internet as an information source (I would sit waiting expectantly in front of the computer while a page took a minute or so to load). “Social media” was just beginning to be developed. Now, I have instant access to a world of information resources with a few taps on a handheld device. When I was diagnosed with RA, I didn’t know anyone else with the disease. Now, thanks to the internet and to this online community, I am in communication with thousands of people who share their experiences of having RA. Any time I am feeling alone, I need only pull up RheumatoidArthritis.net or its Facebook page, and I instantly know that my suffering is not special or unique. Rather it is widespread, and experienced by people coping with it in a multitude of ways. I learn from their tips and their perspective, and feel better able to contend with my disease activity.
Therefore, this Thanksgiving, I am thankful for YOU, for reading this, and for being a part of this community. I wish you a holiday filled with traditions and loved ones, but also with rest and relaxation. Happy Thanksgiving!
When was your last flare?