Now that I’ve had a little time to ponder/digest/process my last rheumy appointment I’m ready to talk a bit about it. I have a lot going on right now and am still catching up from being away for my sister’s wedding. This means that I feel like I’m behind on everything, no matter how much I get done, which just intensifies my mixed feelings from the appointment.
Overall, the appointment went fairly well. I updated my doc on physical therapy and shared the status questionnaires I filled out that I thought were a accurate capture of my current physical limitations. He did not keep a copy- maybe they were more enlightening for me than for him, I’m not sure. My weight, of course, was still creeping up so we talked about my diet changes instituted by my GP, and the increase in D to hopefully help tackle my inflammation.
Despite improvements, however, my inflammation is still high. I poked my doc to look at my last test results to point out how much I have improved, but I can’t argue that we have further to go. While some aspects of my pain (hands and neck) have significantly improved, my overall pain levels are higher on a daily basis (I’ve been averaging daily pain around 4-5) with good days dropping to nothing and bad spiking to 7-8. Those two extremes are the exceptions however- 2-3 days maybe out of a given month.
He asked me if I was getting by okay at these daily levels and I wasn’t sure how to answer that. Do I really have a choice? Of course I get by, I have to. I think I am tolerating pain better, but while my pain has shifted locations, I cannot say it is less in duration or intensity; if anything it has increased. This is incredibly frustrating, and is probably somewhat due to the physical therapy (pushing parts of my body that have become restricted) and stress and travel. Mornings are harder, evenings have been a bit better. Sleep and fatigue about the same.
His recommendation, of course, was to increase my MTX dosage. I hadn’t thought through to this inevitable conclusion, but wasn’t really surprised. I am determined to fight it for a while longer, however. I hope that the PT/D/weight loss will help. I have six weeks until my next round of blood tests, and we’ll see what we will see. If I do not improve, or only improve slightly, I will agree to the dosage increase. If there is significant change, however, hopefully I can avoid it.
I have been through these long, painful periods of waiting for change before, particularly with changes in my thyroid medications. I am not emotionally suited for this sort of forced waiting, however, and am having a particularly difficult time dealing with exhaustion and frustration right now. I am worn thin and hypersensitive and anxious about how much trouble I’m having just coping. I am starting to think about counselling again, just to have a safe place to vent some of my despair and confusion. I think the word I want is bewildered- I just don’t know what to do.