Okay, well, here's the depressing health update...
I saw the Endo NP last week... once again, she kinda took a history, said, "Huh, I dunno. Lemme ask the doctor," then came back and told me what he said. I talked to her about NOT coming in every week to repeat this routine. I'd prefer not to drive an hour and a half to play "relay the message to the doctor," so she agreed that I can just check in over the phone once a week. So now I don't have to come back for a month. ;) The plan is to cut back a little on the steroids in another week.
The scopes and biopsies I have this week will present some interesting challenges. I will need extra IV steroids that day so my body doesn't go into shock from the trauma, so we're working out the details and logistics of how that should play out.
She also wants me to get a bone density scan, since I am at high risk for osteoporosis for about 17 reasons: family history, being a thin, white female, I've had stress fractures, poor nutrition, prolonged steroid use, Vitamin D deficiency, etc. So even if it's okay now, it will be good to have a baseline, because odds are, with all my risk factors, if I don't already have it now, I'll develop osteoporosis sooner or later.
My GI Dr's PA touched base last week with no new ideas. Giving me more narcotics to deal with the symptoms.
The lack of new ideas for treating my GI and joint issues was kinda disconcerting. I felt like the doctors moved from treating the source (since those treatments are not working) to just trying to make me functional and comfortable. Like a hospice patient. I have to admit that I am feeling and functioning much better now that I'm a). sleeping, b). eating, c). in less pain.
Twitchy is doing really poorly, and I'm having some other concerning GI issues. The GI doctor emailed today to ask me to consider going back on Remicade and another med. Not sure what I think about that.
It's a blessing to know, in this time of uncertainty, that I am just a vapor that appears for a little while, then vanishes away. I am so thankful to be able to rest in knowing that God is in control of all this. Today, I only need to face today. I don't need to think about or worry about what will happen five years from now or two weeks from now or tomorrow. I just have no clue what will happen between now and then! I could be all better! I could be dead! Who knows? And really, it doesn't matter. What matters is living to honor God today, right now, this moment. I'm commanded to fix my eyes on Jesus, the author and perfecter of my faith, who, for the joy set before Him, endured the cross, despising the shame, and has sat down at the right hand of God. And so that's what I'm trying to do, every day. ;)