I have not been well this past week. You can probably guess that by the first half of this post's title.
I was naively lulled into a false sense of security by my methotrexate, thinking that maybe I am really not doing that badly with the RA. This line of reasoning came from the fact that I was only having a "minor" flare when I went back on the MTX after the 4-month hiatus. It was just my hips screaming and my hands swelling to the point that they were barely recognizable as my own; nothing systemic going on. I figured things were going pretty well if that was all I was complaining about after months of not being on any treatments.
I have not taken MTX in 3 weeks now. Probably a stupid decision, but the week I was supposed to refill the script was a tough week to pay out-of-pocket. Our new insurance was finally straightened out the following week, but after being off it for two weeks, I was starting to tell myself that maybe I should just wait till I get all my ducks in a row, have a referral to my rheumy, and get my labs done before I resume treatment. After all, I was feeling pretty good, minus the frequent flares in my hands - particularly the thumb and fingers of my right hand - so I figured I could wait a little longer.
My current state - feeling like I've been hit by a truck - started on Thursday as a nagging fatigue and has progressed from there into loopiness, episodes of palpitations and mild chest pain (something that tends to happen when I am stressed), a headache that won't go away, and pain involving my left eye. Along with the eye pain has come blurred vision and strabismus (wandering) in that eye.
Not having chosen a PCP yet, and not wanting to go back to my old PCP - the wait times crept from 20 minutes to nearly 2 hours over the 3 years I had been seeing him - I went to an urgent care center. That doctor noticed the strabismus, which I had not seen myself, and was concerned about that and the headache, so I got to go for a CT scan this morning. Fun! That came back normal, and I assume the EKG he did in the office was fine as well since I haven't heard otherwise. I am just waiting for blood work results now, to rule out Lyme Disease since I was bitten by a couple of ticks on our trip to Virginia in early May. The doctor thinks Lyme is unlikely since it is not nearly as prevalent there as it is here on Long Island.
Tonight I am aching all over, muscles and joints alike, the headache is not yet gone, and my eye is weak and in pain. I woke up the last few days barely able to straighten my right arm at the elbow, and my left shoulder was screaming while I tried to prop myself up on my left arm for a few minutes last night.
I don't think I have Lyme Disease. I think I am having one hell of a flare.
Feeling relatively good for a few months must not mean as much in terms of disease activity as I was secretly hoping it did. How stupid and naive of me to assume that I'd be okay going off MTX for a little while again!
On a separate, but somewhat related topic, I have been thinking of my own mortality since yesterday. A blogger in the RA community,
RA Superbitch, passed away last week. There hasn't been an announcement on her blog or Facebook page concerning the details, but she had been dealt a really shitty hand with her RA and it seems to me, along with many others, that her RA is what caused her death. I did not "know" her well outside of reading a blog post here and there, but I know she was a cherished part of the RA blogosphere and will be sorely missed. She was in her 30s, with a husband and young son, so it really hits close to home for me. And makes me think that much more about how serious this disease really is.
Now that all of this has been said, I am going to buckle down and choose a PCP. It's time to really focus on treating my RA.
