Many readers know that, for almost the past year, I have been treating my rheumatoid arthritis without medications. Some people have interpreted this as me saying that I’m not doing anything for my RA, something which could not be further from the truth.
During this past year, I attended physical therapy on a 2x or 3x weekly basis, I successfully incorporated an extended-period of daily pool exercises, and I made great strides on the emotional front, through actions that range from adopting various lifestyle changes, to removing multiple pre-existing stress triggers, and increasing my levels of acceptance of this disease with which I live.
On the previous occasions when I have shared the fact that I am not taking any meds, while most of the responses that I received were generally supportive, I did notice an uptick in critical comments. I was accused of being irresponsible, of being anti-med, of being an advocate for snake-oil “cures,” etc. I also received messages from some people, demanding that I fully explain–publicly–why I would ever even consider following such a route, when it came to my treatment options.
But, as with many other aspects of living with RA, the final answer comes down to determining what it right for *me*, despite all of the suggestions, comments, and feedback that I receive. People who have been reading my blog for a while know me well. I have never considered the words that I write here as directions to others, or suggestions about what they should or should not do. When I write, I am only choosing to share what I have learned and continue to learn about living with this chronic disease. I have never had any qualms about talking about what does and does not work for me, and by doing so I have never made any assumptions that I might be speaking for others. I only speak for myself.
And while I may not have always fully articulated the reasons why I have not taken any medications over the past year, I have always had full confidence in the knowledge that the decisions that I have made in the past and continue to make in the present are the right decisions, for me. And, as with many other aspects of life, there is much to be gained from having confidence in one’s own actions.
Yesterday afternoon, during a 90-minute visit with my rheumatologist, I made the decision that I would once again start taking medications to treat my rheumatoid arthritis. You might think this decision was the result of pressure that I received on his behalf, but this was not at all the case. In fact, I left the office with three plans that my rheumatologist himself proposed, and which he fully supported; Plan A and Plan B involved different types of medicines, and Plan C involved continuing on the med-free path that I am currently on.
My decision to return to meds, even though it was made during this hour and a half conversation that I had with my doctor, was based on my ability to finally understand and communicate many of the different reasons why I stopped taking medicines in the first place. And by being able to so clearly understand why I needed to stop taking meds, I was also able to confidently make the decision to once again take meds.
- Connecting with my “non-RA” self: I have learned that no matter how much pain I might be in, no matter how much disability I might be experiencing, there is always a part of myself that will remain unaffected by this disease. Yes, there have been many times when it feels like my rheumatoid arthritis has taken over my complete self, but I have learned that–even in these moments of crisis–there is still a part of myself that I can tap into, and grab on to…and that by doing so, I am able to pull some sense of order back into my life. Over the past few years, I have noticed that after being on meds for an extended period of time, I start to lose this “non-RA” piece of myself. While this one part of myself never succumbs to the disease, it does eventually start to be affected by the drugs…and when I start to see this part of myself fade away because of the medications, and when I am no longer able to tap into this “non-RA” self for the support that I need, then I–as a complete person–begin to fall apart. It is at this exact moment when I am able to determine that the drugs are doing more harm than good, and that I need to give my body the break that it is asking for.
- Failed hope: I know that I go into every treatment plan with a certain sense of hope. After all, I continue to invest all of the necessary time, effort, and money with the idea that these treatments are going to alleviate some of the pain and disability, and help slow the progression of this disease. I know that every individual responds differently to different meds, and that what works now many not necessarily work in the near future or vice versa. But even with all of this awareness, I think that certainly at the conscious level, and probably even more at the sub-conscious level, there is much more hope than I am even aware of attached to each treatment plan. When that point is reached, where it is determined that a certain treatment plan is not working, despite the brave face that I’ve often put on in the past, the emotional effect is absolutely crushing. Yes, I know that there are many different options which can be tried, and I know that if often takes months to even determine if certain drugs are helping, I know this, and much more. My logical side, my mind, knows exactly what to do, and how to handle the situation. My emotional side, on the other hand, is not always as prepared, and often feels like it’s being dragged on for a long and bumpy ride. Like I mentioned in the previous point above, once this emotional side of myself become too fragile, I need to take the necessary measures to increase its strength. For me, in the past this has meant taking a break from drugs, and for the future, this means exploring further the connections that I have between medicines and hope, and how to deal with this shattered faith and this lost hope, after a treatment plan does not work.
- Financial implications: In an ideal world, all of us would have access to all of the drugs we need, despite our financial situation. Now, when I made the decision a year ago to stop my meds, I can honestly say that the cost of my meds did not factor into my decision, even though many months it practically came down to a decision as to whether we were going to buy my medicines, or have money for food and utilities. (Buying my drugs always won. And yes, for an extended stretch, we did have to deal with multiple utilities frequently being cut…) As I stopped taking drugs, for the reasons explained above, one of the first things I started to notice was that there was actually enough money to pay for what we needed each month…and then, as the months passed, I actually started to realize that there was a little money left over. For the first time in a long time, even though it was still quite thin, we actually had a financial cushion…and my stress levels started to drop. I was no longer continually worrying about how I could pay for my drugs. And as I stopped doing so, I noticed that I had eliminated a huge stress trigger…and as I’ve learned over the past few years, anytime my stress levels goes down my RA gets better, and anytime my stress levels go up my RA gets worse. Like I said, this wasn’t a factor that was considered going into my decision to stop taking drugs, but it was certainly something that I noticed afterwards.
So I don’t know exactly when, but over the next week or so I will once again start taking yet-to-be-determined medications in hopes of controlling the inflammation in my joints. (First, I have to have some different lab tests done, probably at the beginning of next week.) Yes, I’m already beginning to wonder how all of this might be paid for, but in the end, things will work out, as they have always done in the past. (And if they cut my cable or telephone line, so be it!)
I will never regret my decision to not take drugs over the past year. Doing so has helped me learn so much (only part of which is highlighted above), and has allowed me to strengthen a part of myself that I know will continue to carry me far into the future. And chances are that I will more than likely take another one of these extended breaks in the future…but I’ll cross that bridge once I get there.
I know that these decisions that I have made in the past, and continue to make in the present, are the right decision for me. They may not make sense for everyone, but the only thing that matters is that they make sense for me. To know that even my rheumatologist, in addition to my friends and family, understands as much, means a lot to me.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!