After some major issues during my Italy trip, I went through another series of tests and poking and prodding in December and January. Eating had become so painful that I couldn't keep anything solid down. So I put myself on a liquid/pureed food diet with my doc's support. Pureed foods even over Christmas. You should have seen the look on my family's face as I blended the Christmas ham with other side dishes into a color that should not be eaten and then proceed to slurp it down. It actually was tasty. Truly. As long as you didn't look at it :).
The last gastroparesis test was normal, a good thing, but definitely not helpful in figuring out why I am having such trouble eating. Several other tests were fairly normal...no "smoking guns" as to what the culprit is. My GI doc and rheumo doc are conversing and we've done some additional tests for rarer auto-immune diseases. All normal thus far. It never ceases to amaze me what we can do with medical technology and...how much more I wish we could do with it. Seriously, someone needs to invent the tricorder. Now please. But I do appreciate how my docs think outside the box and work together. It is such a blessing and help.
I'm happy to report that January and February were, in general, good months in the sense that things have stabilized and been consistent. My pain levels are tolerable. Even if I sleep through my 2:30am "take your pain med alarm," and take the med hours later, it is able to catch up with the pain after about 4 hours, which was not the case a few months ago when a missed pain med dose usually meant the entire day in bed, so that is a huge improvement.
My lupus flared a few weeks ago. It was my first flare since starting the new medicine in June and it was pretty rough. I couldn't walk much due to the joint inflammation and my stomach pain got pretty bad too. The nurse at the rheumo doc's office probably thought I was crazy because I was so excited that both my stomach and my joints started hurting at the same time...but it's a really good data point to support my GI doc's theory that my GI stuff is all auto-immune related. A healthy dose of steroids stopped the flare after just two doses! And the stomach pain lessened as well. Another data point! And a huge victory that I was responsive to the steroids...it's been touch and go with how well they have been working.
My joints in general have been acting up more...most likely due to weaning myself off of one med (with the doc's approval of course). I'm back on it again (bummer), but if that's what I need right now, then I'll be a big girl and swallow my pills. Still waiting to see if the joints will settle down, but they are much much better than they were during the flare.
Still, my biggest excitement is eating solid food again. Small portions and not at every meal. But oh my goodness it is awesome to to chew again!
Sometimes I feel like I'm turning into that woman - the one who only ever talks about her latest ailment. I know I do talk about it quite a bit, but only because it's a big part of my life right now. Lord willing, that won't always be the case, or I'll learn how to balance things better, but I am so thankful to my friends and family that let me talk it out and listen and support, encourage, and pray for me. I have to make a lot of decisions sometimes at the doctor's office or over the phone with the insurance company, and it's nice to be able to share with someone the trades I had to make, or the concerns I have. I have so many wonderful listening ears and caring hearts in my life. And I have the Lord, who is with me always, even when it's just me sitting in the room waiting for the doctor to come in.
Thank you Lord, for your provision, sustaining grace in my life, patience with my ups and downs, and mercies. And for the quiet stillness that you allow me to find when everything else seems to be falling apart.
"He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, "My refuge and my fortress, my God, in whom I trust" - Psalm 91:1-2