Sunday, January 25, 2015

Frustrated

I feel like I'm not making any progress.  I had a hard week, and I was hoping for a speedier recovery. I need to remember that I've still come a long way, even with this weeks setback - maintaining perspective is important!  I need to be patient!

Good things:
  • I've survived 30 days on this diet as of today!
  • I've added bananas (uncertain whether I can handle them - too much sugar?)
  • I've added yellow summer squash (hooray less boring soup!)
  • I've added homemade 24-hour yogurt and butter (not homemade...)
  • I've stopped pureeing all of my carrots and winter squash (yay for chewing!)
  • Bacon is delicious
  • I've tapered to 12.5 mg of prednisone per day (I  had been on doses of 20+mg for over a year, much of that at 40 mg, eek!)
  • I look pretty good... most of my "thin" pants fit again, and my steroid "moon face" is melting!  Plus there's the fake tan from the orange foods, haha.
  • For the past 3 nights, my son has only woken up once each night!  And daughter slept decently in her new toddler bed, woo-hoo for mommy getting a little sleep too!

Bad things:

  • I didn't taper to 10 mg of prednisone today like I was hoping to, my belly is still too unstable
  • My belly is unstable... things got really bad earlier in the week after tapering and some crazy stress (daughter had a very high fever for 5 days and son refused to sleep as well, so mommy was very tired and very worried, and with daughter home got no work done so work was stressful as well)
  • My belly is waking me up during the night, so even though kids are giving me a chance to sleep, belly is interfering
  • I tried an anti-spasmodic for the first time this week, and it didn't help much :(
Worries:
  • The doctor wants to try Remicade one more time, in case the improvement I saw was due to Remicade finally kicking in and not the diet itself.  It makes me very angry that doctors discount the diet when there is so, so much anecdotal evidence out there that it at least helps... not necessarily a cure, but helps... but I suppose Remicade could be a piece of the puzzle, so I'll give it one more shot later this week.  In the meantime, fingers crossed my body straightens itself back out to the improved state I was experiencing a few weeks ago!
  • Remicade is scary, always.
  • My appointment for Remicade is in NYC at 9 am... how on earth am I going to get out of my house in time?  There's no way my belly is going to allow that!
  • That one of the foods I added could be causing some delayed irritation... like dairy.  But my life (well, at least my mental state) got so much better when yogurt became an option... and I've given up dairy for months several times in the past (breastfeeding) and didn't notice any improvement.  So I'm sticking with it for now!
  • That I won't have my life under control when my live-in mother-in-law goes on an extended vacation starting in mid-February (she's a real mixed blessing... stressful by the nature of our situation, but very helpful)

What now?
I'm not going to make any changes to my diet this week, other than backing off on fats and sugars.  Not eliminating them, but backing off.  I will go for the Remicade infusion on Thursday, and if I stabilize this week I will try to taper to 10 mg of Prednisone next weekend.  Hopefully I'll get to add a nice food of some kind later next week after the prednisone taper... if things are going really well I might spring for eggs or garlic!  If not... maybe just some sage (spice) or zucchini (since yellow squash seems to be ok so far).

No comments:

Post a Comment

Popular Posts