I think pred causes gallstones, but I'm not sure...

I'm just so worn down. I had to walk through 50 ft of knee-deep snow (with bare legs) this morning to get to my car. It was cold, of course, but also exhausting. I don't know how I made it through the day. I drove myself and just gritted my teeth to get through the day. I've been feeling really worn out the past 2-3 weeks, no matter how much I rest. The stomach bug this week put me over the edge.

I saw my therapist (whew) and my hematologist. The hematologist always runs really late. I expect it now, but it's still exhausting. I waited 2.5 hrs. It was a tough visit, because when I'm this worn out I feel emotionally spent, too. I expressed my frustration that my day-to-day function isn't really improving unless I compare by years. He said my test results are looking better so that shows I'm doing better. I wanted to whallop him with those results. Blood tests don't measure fatigue or even pain. They don't show that going grocery shopping one day means the next I'm completely worn out, unable to do anything at all. They don't measure not being able to work or the subsequent fallout.

He pointed out various signs/symptoms that have improved since the rtx in October-- no Wegs rashes, no bleeding lungs, etc... But many of the things we listed come right back if I lower the pred by 1/2 mg pred!

He said it takes years to recover and I should be patient. I don't want anyone telling me to be patient anymore. It's been 5 yrs since onset and almost 4 yrs since diagnosis. I've been plenty patient. Feeling lousy every single day for 5 yrs is not easy. He said it could be another year to get back on my feet. I told him not to repeat that, thank you very much. I just can't hear it.

My next appt with my Wegs doc is Mar 31 and we'd probably do a 2nd round of ritux in April. We both agreed that was too long to wait, so he emailed him to suggest that we do a round of rtx much sooner, and maybe do it every 3-4 months instead of every 6. That's not the typical Wegs protocol, so I have no idea if my doc will go for it.

I really like this doc but today I left in tears. I felt totally unvalidated and unheard. I had a 2hr drive to do and I pretty much fell into the house.