Pesky prescriptions!
Rheumatoid Arthritis (RA) is a chronic disease - that means, its life long. It won't just 'go away'. People diagnosed with RA are stuck with this little buddy for the rest of their lives. It affects the soft tissues surrounding any and all joints, but it can also affect other organs such as your lungs, heart, kidneys and liver. In essence, your body mistakenly attacks healthy tissue. RA can also lead to mental health illness such as depression. It affects everyone differently and our symptoms will vary not only from person to person, but each day my disease activity can look very different. And for anyone diagnosed with RA, its painful, exhausting, lonely and scary.
But the good news is that there is some great research being done and in the 15 years since I was diagnosed, the treatments have made leaps and bounds. I remember in the early days when I was not only having joints drained, injections in my butt, and numerous meds to take, my specialist telling me that one day, I would be able to have one infusion every six months and that would be about it. I thought he was insane and having a laugh. But here I am 15 years later and that is pretty much my current treadmill.
The catch that I have found is access to medications and treatment. I travel extensively and have done so throughout my career and since my diagnosis. That has thrown up lots of challenges in terms of ensuring continuity of care. Sometimes I have had to postpone or even cancel travel plans because of disease activity and the need to put treatment first. I have also travelled with original letters from my specialist for Customs and Border Control folk because I was carrying syringes and meds. Sometimes that was scary in itself and there have been times when it has taken some convincing of officials that all was good! But as a general rule, I have managed to work through solutions with my specialist that have allowed me to continue to enjoy the life I want.
The most common treatments for RA are over-the-counter non steroidal anti-inflammatory drugs (or NSAIDs for short). These include medications such as ibuprofen and naproxen which I have found are generally pretty easy to get ahold of when necessary. But they are nothing more than a bandaid in truth and give minimal pain relief for short bursts. Certainly not a long term solution. But the real kicker is the prescription NSAIDs and disease modifying anti-rheumatic (DMARDs)meds. These are the true saviours that reduce pain and inflammation and most importantly, slow down RA and the damage it can do to one's joints. They are absolutely essential for me in controlling the disease progression and activity, and frankly, I wouldn't be able to do any of things I have managed to do without these treatments. They aren't necessarily kind, because they target the immune system, weakening its ability to fight infections and other diseases, and are tough on the old lungs, kidneys and liver. So regular blood tests are a must. Nonetheless, they work for me.
Access to these treatments is the challenge. I have found it really quite difficult sometimes to get sufficient refills to last me during travel. For example, if I am going to be travelling for more than a month, ensuring that I can not only obtain but also then carry the required amount of medications is not always easy. I recently miscalculated my Methotrexate needs and figured out that I would fall short by about 3 weeks. That is a big deal. Fortunately, while travelling in countries with whom Australia has healthcare treaties, I have been able to take my Australian prescription to local doctors to obtain a refill authority. A word of wisdom - that is definitely not the case in the USA! You do have to plan around blood tests and infusions which generally require a day patient hospital stay. So in short, it can be incredibly inconvenient but then I guess so is just having RA.
So what I have learned?
1. Plan carefully and calculate accurately. Talk to your doctor about your travel plans and medication needs and get prescriptions filled to cover you for as long as you travel out of country.
2. Get a letter from your doctor explaining your condition just in case you need to access medical care while away.
3. Always carry non-prescription NSAIDs to get you by.
4. Plan your blood tests around your travel if possible, and work closely with your doctor on timings. Keep your doctor in the loop!
5. Expect the unexpected!! Rest when you need to, say 'no' often particularly when fatigue sets in and be ready to return home if necessary.
6. Finally......don't tell me I can't travel, explore and live the life I want to! RA is not in charge here, I am.
