Riding the Rituxan Express

My second Rituxan infusion last Thursday was an express trip to hopefully feeling better.  Since the initial infusion two weeks ago was uneventful and I did not react to the medication in any way, this second infusion was on the proverbial “fast track”.  The drip speed was periodically adjusted upwards over the three hours that it took to get all that stuff into me.  As long as I felt okay (no headache or other odd happenings), we were going to get this infusion done in the most efficient manner possible. Amazing and a bit surreal, I must admit.

Once again, the methylprednisolone kept me up very late. My hands were not hurting so I was able to do a lot of paper piecing on my current quilt. Seems like the pattern is to sleep away the afternoon after the infusion and then be up late in to the night.  The rheumatologist is very optimistic about this new medication and my reaction to the first infusion.  Two months should be enough time to tell just how well (or not well) Rituxan works for me. So far, so good for this RA science experiment.

I have a short list of things I am looking forward to being able to do in the short term.  I have been unable to do so many things this summer, I am happy to see fall beginning as the nights cool off here and the bushes get their berries.  For me, this summer of pain and discomfort is one to let go and forget about.

My “want to do” list includes:

  1. Weeding and planting in my flower gardens
  2. Paper-piecing rosettes on my quilt project  
  3. Walking the dog every day around the ponds (a distance of 1.5 miles)
  4. Taking the stairs with no shortness of breath
  5. Carrying in the groceries myself, more than one bag at a time
  6. Walking, walking, walking
  7. Sleeping better and longer every night 

Not too ambitious of a list, is it?  I sure hope I can achieve these things that I used to take for granted.

The best thing is that I may be able to get my hair trimmed.  When I got sick, I decided I would not have it cut until I was feeling better.  Let’s hope I get there soon since my hair is almost to my waist – it is kind of like wearing a carpet down your back. While the rest of me took a beating from the pleurisy and the RA symptoms this summer, my hair was flourishing and grew like crazy. At least it didn’t turn white or anything. Go figure.

Susan

Getting All Those “To Dos” Done

“That's the thing about pain.... It demands to be felt.”

John Green, The Fault in Our Stars

I have things I want to do and today I am going to try to do some of them – sewing, watering flowers, grocery shopping, and straightening up certain areas of the house.  This will be a slow process, but I think I can get a few items checked off the to-do list. My project manager’s mindset and RA are definitely at odds with one another as I try to navigate my to-do list while the RA gets in the way.  Guess RA isn’t a risk in my personal project plan – dealing with RA is a certainty for the rest of my days. That makes it a 100% kind of a risk, too funny. A good friend of mine has always said there are only two types of risk – those that happen and those that do not. Boy, was he right. (Thank you, Phil!)

Wow, this coming week is my sixth week of pleurisy and respiratory issues.  That is way too long to feel so bad.  Combine the past five weeks and an extra week before when the shingles struck and that equals no fun so far this summer. Ever so slowly, the lungs are clearing up.  The smoke from the Nederland-area wildfire here in Colorado kept me up last night. That was expected, so I had a new book ready for reading. I read the whole book, too, which was actually enjoyable.  The more I read, the faster I get at reading.  I need to rejoin the library before this gets too expensive. In any case, it is nice to see these lung-related symptoms disappear, and the sooner the better.

The bigger issue is the doctor-induced RA flare that I am experiencing, ouch. There are three more weeks until my first Rituxan infusion. I am definitely counting down during this Remicade to Rituxan transition.  And as I approach my birthday this week, I feel like I am 150 years old with all these aches and pains.  It is very discouraging to wake up in the morning and be really hurting.  My expectation is that sleep is restorative, but that does not seem to be the case with rheumatoid disease. Looks like sleep obsession may also be a common issue for RA patients. Ho hum, too many things to think about, isn’t it?

Interestingly enough, I am feeling pretty upbeat about everything in spite of the pain and the shortness of breath. Must be that glass half full thing going on.  Tomorrow should be a fun day.  I am getting “sprung” from the house by two girlfriends for lunch and have a date in the evening with a handsome man.  Who could ask for anything more?

Here’s hoping tomorrow is an exceptionally good day!

Susan

There is No Cure for Rheumatoid Arthritis

Lather, rinse, repeat: There is no cure for rheumatoid arthritis. The disease can be managed across its many ups and downs, but it never actually goes away. Up until my recent bout of shingles and pleurisy, I was actually doing really well with my treatments.  Better than I knew, actually. It has been two weeks and I still can’t breathe well or do much of anything besides sit, read and rest. Even talking can be challenging, sigh. I have enjoyed being one of the few patients who takes the stairs up and down to the rheumatologist’s office on the second floor of the medical building.

I read an article with a recommendation for RA patients to do the things they want to do NOW since you can’t be sure you can do them later on. Seems like good advice to me.  I started a hand-pieced English Paper piecing quilt project called La Passacaglia several months ago for this very reason. Not only is it a gorgeous quilt, it is pieced and then quilted by hand. I have had no difficulty with hand or machine sewing, at least not yet.  Funny enough, I can’t knit very well anymore. The stiffness and soreness in my fingers makes my motions very rough and the resulting knitting looks like the collie chewed on it for a while.

My hope is to finish this quilt and begin a second pattern, but I guess you never know. Even on a good day, I am a very slow sewist. The limitations and pain can really impact doing the things you like to do, can’t they? The thought that striving for “good enough” may be the best that you get can be quite discouraging. On the flip side, maybe “good enough” is exactly what it says - good enough to get you through your days and keep you productive and happy.  Qui vivra verra, I guess.

Here’s hoping tomorrow is another good day!
Susan

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