Clarity in Making RA Decisions
I just had my fourth joint replacement. My first one, the right hip, came literally just a few weeks after my RA diagnosis almost 10 years ago. The left shoulder followed less than a year later. Then in 2013 came my left knee, and now my right shoulder. In the midst of all this came two spinal fusions and a flurry of soft-tissue surgeries, including two rotator cuff repairs on the right shoulder I have now replaced.
The decision to have surgery for RA
In some ways, once you’ve been through a major surgery like joint replacement, the decision becomes a bit easier because you know more about what to expect. But every decision has its own circumstances and challenges and has to be made on its own merits.
For me, the decision to replace my right shoulder was not a matter of “if” as much as “when.” In addition to the two rotator cuff repairs, we’d done numerous steroid injections, an arthroscopic cleanup, and physical therapy on the shoulder. I was basically out of options, was having consistent pain and was losing range of motion to the point that it was affecting my daily activities. More physical therapy wasn’t going to help and might actually aggravate the situation. Steroid or hyaluronic acid injections might provide some temporary relief, but ultimately the joint had shown progressive damage that was only going to get worse.
My choices were reduced to either living with the increasing pain and limitations or improving the situation through surgery. “Either/or” decisions give you a great deal of clarity.
It can be difficult to find that kind of simplicity when making other decisions to treat your RA.
Joint replacements affect one part of your body and the potential complications and expected outcomes are very well documented. RA, on the other hand, is system-wide and affects everyone differently. Even well-documented medications with proven results can pose risks or not be effective for all patients. In addition, the significant impact of diet and lifestyle is still being examined – often with confusing results. To complicate matters even further, the treatment decisions you make today can potentially resonate for years to come.
Trust Overcomes Fear
There’s no doubt that an RA diagnosis, on its own, can be overwhelming and there can be a lot of anxiety (or even downright fear) when making treatment decisions. I have found that trust overcomes fear and helps you make the decision that’s right for you (which, after all, is the only right decision).
You must first trust yourself to know your body, your symptoms, and your preferences. I personally favor a pharmaceutical approach because I like all the science and data behind it. I like knowing how other patients have responded to treatments. Other people believe strongly in a more holistic approach or even a combination of the two.
The second most important point of trust is with your rheumatologist. Even if you go a completely natural route, you need to find a doctor who can monitor you and the results of your treatment. In addition to regular physical exams, lab results, X-rays and other tests can provide information about how well your RA is being controlled. Your treatment plan may very well change over time and you need a rheumatologist that you trust to help you navigate your options.
The power of community
Doctors can give us advice, but only another patient can give us experience
Third, and I think this is extremely important, trust in the community. A lot of what we know about RA is medical jargon that has been sanitized by lawyers. I love community, especially sites like RheumatoidArthrits.net, where patients can share their actual experiences, ask questions without being judged, and both receive and provide support for each other. While I am excited about the age we live in because of the amazing research that’s being done in RA, I’m even more excited because unlike past generations, we have the ability for patients to connect with one another.
Finally, don’t forget that you can take some time. For whatever reason, we feel compelled to immediately respond to a doctor’s recommendation within the 15-minutes we’re allocated for a routine visit. We wouldn’t make any other important decision like that. It’s perfectly okay to go home, think about things, do some research, connect with family and community, then call your doctor’s office back the next day or the next week with a decision.
Like many other decisions in life, it comes down to making the best decision you can with the most information you have at the time. Fortunately, we live in a time when both information and support are at our fingertips. The process may not be perfect, but it does help to add some clarity to our decisions.
When was your last flare?