During the #ChronicLife experiment, in which I live tweeted for 48 hours, I announced that my current medication regimen, the one I’ve been on the longest ever, is no longer working.
I got a ton and love and support about it, but supporters seemed more upset about it that I am.
I think I’ve been in denial about it for so long that when I finally admitted it to myself, I had already made peace with it.
For me, if I can go a year without either plateauing, or getting liver or kidney toxicity from a medication, that’s a success in my book.
Despite some dosing changes, I have been on my current regimen – albeit with dose changes – for around two years now.
So it was inevitable that one day, it would stop working or I would have to go off of it.
And I know I am far from alone in this game of cycling through medications.
Some medications are automatically off the table. Because Humira caused my lupus to flare, anti-TNFs are out for me completely.
And how do I know that the medication is no longer working? First of all, my fatigue is awful. Most days I come home from work/school, eat dinner, and end up falling asleep by 9 o’clock. My boyfriend will wake me up at 11:30 or so, tell me to brush my teeth and take my meds, and then I go back to bed.
Second, I’ve been having significant stiffness to a degree that I haven’t experienced in a long time, if ever. I can walk down stairs okay, but I can barely walk up ten stairs without my body stiffening to the point of not being able to move.
Of course, all of this is compounded by the cold weather, but it is not the weather alone.
Again, this was inevitable. It was bound to happen sometime. It wasn’t an if, but a when.
So I finally saw my rheum. I laid everything out for her. The fatigue, the stiffness. The fact that my right hip and foot are in almost constant pain. In fact, the nodule on my right foot has gotten so bad that she could clearly see it through my sock.
And I admitted to her that I am somewhat frustrated with my quality of life at the moment. If I do anything during the week, I come home completely exhausted and I end up going go to bed super early. On the weekends, I can stay up later, but all I do is homework, often not getting out of my pajamas.
And my rheum agreed. She said that my degree of fatigue really concerns her, and given that and my stiffness, believes I am flaring.
Why does that always surprise me? Why don’t I realize on my own that I’m flaring? I guess when I think of a flare, I think of widespread pain and not being able to get out of bed. But it makes sense.
So I am going off of Tacrolimus and starting on Imuran. I’m not starting it until the weekend, just to be safe, so I’ll write another post about how that goes. My rheum said that if I have GI issues, I won’t be able to stay on it, so I hope that doesn’t happen.
She also suggested a cortisone shot for the bursitis in my hip. I’ve had issues with my right hip since I got sick, but it has progressively gotten worse, and I’ve never done anything to treat it directly.
I was really hesitant to do the injection. It was one of those things I convinced myself I wouldn’t do. I’ve heard really mixed things, with some people saying it’s nothing, and other people saying that it’s the most painful thing they’ve ever experienced.
I was pleasantly surprised. It wasn’t too bad. My rheum was really good about telling me what she was doing every step of the way. I felt the needle go in, and I felt the cortisone go in, but it wasn’t particularly painful. Now my hip feels a bit achy and weird, but nothing I can’t handle.
And that’s really what made me go through with it. It couldn’t hurt more than the pain my hip is already in. And it really didn’t.
But it frustrates me that the threshold of what I will do in the name of my health is always changing.
I said I would never self-inject, and eventually, I did. I said I would never get a cortisone shot, and now I have. I think in wanting to gain some measure of control over these illnesses, I create boundaries, but those boundaries become cloudier the longer I live with these illnesses.
I told my rheum that I really hope the day comes when I can walk into her office and tell her that I feel awesome and don’t know why I’m there, instead of coming in with a laundry list of problems. She said she would like that, too.
And we had a few laughs along the way, which I think is a good sign. If you can laugh with the person who pokes and prods you, who touches your painful parts just to make sure they’re painful, then you’re doing pretty good.
I see my rheum again in six weeks, which is the shortest amount of time between rheum appointments that I’ve had since I first got sick. I don’t really know whether I should be happy or sad about that.
But I do think this appointment was really good. I feel like my rheum really listened to my concerns and really heard me. And I think the changes are good, too. I hope they are worth it. And of course, I really hope that they work!