So the usual Thursday trip to HQ in Boston became a 4-day trip at around 11:00 on Wednesday night. There’s a big event in Boston on Saturday and another event in Worcester on Sunday, so RFD and FO decided it made more sense to stay in Boston. RFD and FO are staying with FO’s sister, and I’m staying with one of the Boston-area RFD’s.
It’s been challenging so far because I’m not feeling physically well. I’m not sure if reducing the 6-MP dose is making me sicker or if it’s the iron supplements irritating my GI system. Either way, it’s not a lot of fun. I just hope no one has noticed how often I have to run off to the bathroom. For added fun, there’s only one stall in the women’s restroom, but we have 30-40 people at HQ, plus several other offices/businesses on the same floor. Maybe I just need to tape my restroom access card to my forehead….
The iron doesn’t seem to be improving the fatigue and weakness, but maybe it’s still too soon to tell. I have repeat labs on Monday and an appointment with my gastroenterologist on Tuesday, so we’ll see what the labs say and what the doc recommends. Part of me would love to go off the 6-MP because it makes me so sick, but I’m also worried that the UC will get worse again if I have to go off it. Trying to manage the UC and the UC meds seems like such a crapshoot, and I’m so tired of it.
Right now I’m just tired of everything. I’m tired of being sick all the time, I’m tired of pain, I’m tired of spending so much time in doctors’ offices, I’m tired of barely being able to stand up, I’m tired of the stares and questions when I use my cane, I’m tired of being isolated, I’m tired of being limited, I’m tired of being strong, I’m tired of surviving.
I just feel so alone with all of it.
And I feel like I shouldn’t be saying any of this, that it’s too negative and nobody wants to hear it. But I’ll hit the “Publish Post” button because maybe then I’ll at least feel less alone.