Day 1

Day 1 wasn’t nearly as challenging this time as it was in 2012.  You can find that story at the bottom of this page.  

I did my normal morning routine, which generally consists of waking around 5:30 AM, taking a trip to the bathroom, then crawling back in bed to do the Wordle and Spelling Bee for about 15 minutes.  I checked my heart rate and oxygen.  I then got up, took my thyroid medicine and started the long list of measurements I wanted to do at the start of everything, starting with my weight.  It is depressing, but I’m putting it all in here, as it helps me be accountable.  I also did measurements of many of my joints and photos of my feet, hands, and eyes (for Thyroid Eye Disease inflammation).  Some of these measurements I’m going to take daily, some weekly until my appointment in January.  I’ll share them occasionally, in case anybody is interested in how it is going.  There are a few I am still debating whether or not to share.

Interestingly, joints on the right side of my body seem more inflamed than the left.  The exception is my elbow.  My left elbow doesn’t straighten all the way and was hard to measure.

One concern I’ve had is I’ve been retaining a lot of water the last year or two, which increased quite a bit (just my own observation) since the new medication I took 4 ½ weeks ago.  I also gained 6 pounds in 3 days after that medication, which makes me think the water retention is not my imagination.  Also, when I visited my doctor Friday, my blood pressure, which has been creeping up, was higher than I can ever remember it being in the last 12 years at 144/88.  This morning, it was 144/99!  I need to get this down.  Just a month ago, I believe it was low 130s over low 80s (taken multiple times during my infusion). I thought that was too high.  This is getting a bit scary.  Of note, my RA the past 3 days (Fri-Sun) has been extremely bad.  I’m losing function very rapidly, and I’m unclear why.  I do have some theories, just theories:

• I got Covid in mid-July for the first time.  My doc said I should stop the Orencia because of the Covid, which I did.  I was sick for 4 weeks.  I could only take 1-2 more shots before I needed to stop again for the Rituxan, so made the decision to not restart Orencia.  I wasn’t feeling any worse after 4 weeks, but wonder now if I am feeling worse because I’ve been off it 2.5 months.
• Some form of long Covid
• Bad reaction to the Rituxan

I didn’t eat enough today.  I will prepare more this week with food.  I wasn’t starving like I was 12 years ago, and I don’t have sugar addiction like I did then.  Now that it’s about bedtime, I’m a little hungry though.

More to come!