Rheumatoid Arthritis (RA) is a drain in all regards; the pain and fatigue it causes drain away energy; the medical care as well as lost wages and opportunities it often involves, drain away money; its symptoms and treatment both drain away time.
RA and derailed plans
A flare is perhaps the most obvious source of RA time suck. I can have detailed plans made weeks or months ahead of time, but like a vigorous shake on an etch-a-sketch RA will erase my itinerary by rendering me unable to do anything. The increased pain and fatigue of an RA flare can make it hard to get out of bed, much less leave the house. RA has grounded me many times, causing me to miss work, trips, special events, and what-would-have-been productive weekends. After a flare, I always feel behind after the days, or in some cases even weeks, of being able to do little more than get through the day.
Infections impact life with RA
Not only do the symptoms of RA steal away time, so do the frequent illnesses that often accompany it. As RA in an autoimmune condition, those of us with this disease tend to get sick more often because our immune systems are busy sending friendly fire at our joints and tissues instead of focusing solely on germs and viruses. Furthermore, many drugs used to treat RA are immunosuppressant drugs. These can be very effective in limiting the immune system’s attack on one’s body, but they also reduce the immune system’s ability to do the job it is designed to do. This leads to even more colds, flus, and infections, which can land me in bed or on the couch even when I’m not in a flare.
Aside from the immunosuppressant impact of RA drugs on the body, medicines used to treat the disease can involve a wide range of side effects. I’ve been on drugs that have caused fatigue, sleeplessness, and nausea; one medication caused severe vomiting and I had to discontinue taking it. RA itself can make us feel awful and get sick more often, and the drugs used to treat it can make us more susceptible to illness and/or make us sick. Meanwhile, the clock keeps ticking, the world keeps turning, and I often wonder how I’ll catch up with all my responsibilities.
The time spent on receiving medical treatment also nibbles away at my calendar. When I’m doing well, I have check-ups with my rheumatologist every three months. This frequency increases with my disease activity, so some years I may have twice as many rheumatologist visits. In addition, I receive Orencia infusions, which require me to visit the infusion center every four weeks. Depending on how busy the center is, I’m there anywhere from one to two hours, not counting travel time. In addition, I’m also on Plaquenil, which can cause toxicity in the eyes. Therefore, I have to visit the ophthalmologist every six months for field visions tests and an exam so that any toxicity that may develop is caught early. I also see my gynecologist more than the standard annual visit due to the frequent yeast infections I get as a result of being on immunosuppressants. Similarly, I see an ENT for recurring sinus infections, and last year a bout of whooping cough I contracted required about five visits to a pulmonologist. All of these various appointments add up, eating into both my sick leave and my free time.
The impacts of RA are so multi-faceted and far-reaching, creeping into all areas of life. Those of us who manage to meet our major goals in spite of the disease often do so on a different timeline than we would if not contending with a chronic illness. While I have thus far been able to lead a fairly “normal” life, my timeline has certainly included spans where I accomplished little other than survival, these little black holes of lost productivity that punctuate my life.