Tuesday, July 23, 2013
Carpe Diem "Sieze the Day"
Traveling with a fairly severe disease is a bit of a challenge occasionally. Rheumatoid Arthritis, an auto immune disease with which I was diagnosed about four years ago, is a disease for which there is no cure, and it can result in unbelievably painful, disfigured, and swollen joints. It can worsen, even though there are a myriad of drugs, some with severe side-effects, for controlling the symptoms. For some victims, drugs do not work, and they are relegated to painfully twisted joints and/or life in a wheelchair. I have seen patients at a clinic with limbs (fingers, hands, knees) so bent and deformed that they cannot move let alone heft a pack down a trail.
My RA is currently fairly well under control with a somewhat mild drug. The drug causes me to be pretty susceptible to sunburn, have an iron deficiency, and reduces calcium intake, but most other side effects are minimized because of the low dosage I am taking. Other, more potent drugs, would have more severe side effects, such as possible liver problems, sight problems and intestinal problems. Along with the prescription I take, I must supplement it with calcium and vitamin D3 and be much more cognizant that a fall is likely to lead to bones breaking. Occasionally, a few prescription steroid pills or an Aleve are necessary to calm my occasional, intensely painful, "flare-ups". To coin a phrase from our friend, John Hausdoerffer, I am a "walking pharmacy," and carrying a couple years' worth of prescriptions around on my back is not one of the aspects of traveling I enjoy.
But traveling with a disease like this has been interesting. There are days my shoulder and/or wrist are so painful I cannot move them. Other days, the pain is "in the background" all day. Still other days, I have no pain at all. Most days, the pain is minor and I go about the "business" of hiking, kayaking, snorkeling, etc. with no problems. Occasionally, I must rest or take it easy for a couple of days. The pain I experience has led to a major loss of strength in both my hands and especially my left arm. The pain in my hips and legs has resulted in lower body stiffness and a real detriment to my balance because I cannot make my legs and feet move fast enough to compensate for the movement of my upper body. Traveling in countries where sidewalks, if present, are broken, cracked and full of sewage holes and bathrooms are nothing but a place to squat is challenging given my balance issues. The common "handicap accessible" infrastructure of the States is a "foreign" concept in most of the world and makes me appreciate the standards for such things in the US.
Each flare-up brings forth the inevitable thought of whether we can continue our great adventure. One of the reasons Jess and I decided to take this journey at this point in our lives and her career is because we did not know how my disease would progress. So far, it has not affected me much. If it eventually does, I will be tied very tightly to somewhere that I can be regularly tested and monitored and can receive medicine that would not "travel" well! For us, it is important to grow and learn from the rest of the world. To miss this opportunity is not an option to us. We feel it is important to see and do while we still can, and we have not been disappointed. What will we do if my disease worsens (or, for that matter, if Jess gets really sick)?
Sally looking through part of her "pharmacy" on a boat near Maumere, Flores; Staving off the Komodo Dragons on Rica Island, Indonesia; A quiet moment of reflection at LaBuan Bajo, Flores, Indonesia. Posted in Bali, Indonesia.