I’ve been thinking of the different milestones in this journey of mine as “wayposts”. You know, kind of like Rivendell, the last homely house east of the sea. Stopping points, if you will, to look back and assess the journey so far. Sometimes, one has to change the game plan to reflect a new situation, or in light of new information. The Fellowship was formed, after the true nature of the ring was revealed. Dumbledore began giving Harry more information, when he realized that He Who Must Not Be Named was getting stronger. Michael Corleone went to the bathroom in a pasta joint and retrieved a gun from the toilet tank, after his father was shot. You get it, I know.

Sometimes the rules of life change on you, and you have to adjust. I’m almost 6 weeks into my new medication regime, so I thought this would be a good time to pause and reflect.

Remember the movie A League of Their Own? With a world war going on, there was a shortage of eligible players for America’s favorite pastime, baseball. In this new situation, and in the spirit of adaptation and “filling the void”, all-female teams were formed. It wasn’t quite the same, but at least the nation still got its baseball games.

Now imagine that you’re playing baseball, but you’re on the Forest Moon of Endor. With ewoks and wookies on your team. And there’s possibly a different gravity, or less oxygen in the air. And there’s a weird hologram of Anakin Skywalker following you around everywhere.

Should the ewoks play shortstop?

It’s still baseball, but it’s very, very different.

For me, everyday life with an autoimmune disorder is kind of like that. I’m doing the same things that I normally would do – get up, go to work, cook dinner (sometimes) – but I’m doing it through a haze of constant body aches and a crushing fatigue. (Stop following me, Anakin Skywalker!) I’m trying to adjust and adapt to this new world by making changes to my diet and taking the medication that my doctor has prescribed for me.

The medication…this is a big part of me leaving my normal world and going on a journey outside of my comfort zone. The best way to relate this to you is by repeating one of RA Warrior Kelly O’Neill’s “I wish I could say this to people” type of comments. These are things that she would love to say when she’s talking to people about Rheumatoid Disease (RD), and they begin telling her about their (osteo) arthritis pains. She is tempted to say, “Do you take chemotherapy for your arthritis?”

I only mention this to shed light on the fact that RD is unfortunately so much more than aching joints. It’s a whole dang systemic illness, folks. The “first-line-of-defense” medication usually prescribed by rheumatologists is called methotrexate (MTX). Although MTX is commonly used to treat breast cancer, cancer patients receive it a much higher doses than RD patients do. Like, orders of magnitude higher. (700 mg weekly, as compared to 13 – 25 mg weekly…) Still, even at low doses, MTX is somewhat controversial for RD treatment, because it’s a pretty powerful drug with some serious side-effects. I say “controversial” because although it’s considered the normal initial treatment by rheumatologists, within the patient community there are a lot of different opinions. Everyone who is a candidate for it should do some serious research and make their own careful decision about taking it. I decided to give it a chance for a number of reasons:

• I’ve hit the limit on my daily dose of traditional “arthritis” medication, Celebrex, with no improvement in pain level
• MTX reduces inflammation
• MTX can actually slow the progression of RD and keep my joints intact
• Last but not least, insurance companies usually won’t approve other medications, unless the patient has tried MTX first

Most patients in the long run end up taking MTX in conjunction with another medication.

I’m only about 6 doses in, with no huge changes noticed yet. It’s not really expected to start working at least partially until I’ve taken 8 doses, and not fully until 12 doses, so it’s still early for me. Some things have improved, though. The 2 C’s are not bothering me quite as much.

The fact that people with RD or other autoimmune disorders (like inflammatory arthritis) must sometimes resort to taking medications of this caliber serves to highlight the fact that RD isn’t just about stiff joints. My hope for communicating things like this is that there might eventually be a greater public understanding of what it means to have and live with RD.

To put it another way…I’m not a person who has historically taken much medication, not even aspirin. The fact that I’m now taking a medication that can suppress my immune system, cause my hair to fall out, cause me to be nauseous (etc., etc., etc.), means that I’m scared. I wouldn’t take this kind of drug if I had a just had a stiff hip, or if my knee was bothering me. (Or, honestly, if any of the herbal remedies had worked.) I’m taking it because I can’t imagine living with this “zombie flu” long-term. I’m taking it because I’m afraid of total hip replacement surgery.

“World War Z”, anyone?

Sometimes, this illness has actually brought me to tears of frustration and pain. And who wants that?

After all, everyone knows – and I know that you saw this one coming – there’s no crying in baseball.

So for now, I’m adjusting my game plan to include the MTX. I’ll let you know how it goes when I get a bit farther down the road and find another good stopping point.

You can find RA Warrior Kelly O’Neill’s series on methotrexate here.