One Patient's Positive Perspectives

Lupus, Benlysta & Good Mornings

Several days in a row, and this is newsworthy!  Very recently I have seen signs of my lupus quieting, especially at both ends of the day.

Recently, it has been possible to count about 10 successive days of awaking feeling relatively well.  Lupus brain fog has been much lighter than normal, joint stiffness has been less severe and shorter lasting each morning, and my general sense of well-being has been consistently and significantly improved.  This sharply contrasts with a long-term pattern of feeling horrible, miserable and unable to function that has historically been part of my average morning experience.

Treatments with Benlysta passed the two month mark last week with my 4th infusion almost one week ago, delayed slightly by my trip out-of-town the previous Friday on the anniversary of 8 weeks since the infusions started.  Something about my health has been clearly different in these recent days!  Although it may take some time to confirm that these obvious signs of possible remission are due to my Benlysta treatment, there is little real doubt in my mind that the new medication is responsible for some observable improvements in my health.

I cannot recall a recent time when I felt good in the morning more than one or two isolated days each month, let alone each week.  Having now felt “decent” every morning for over longer than a week is completely unprecedented.  Yippee!

Feeling measurably better

After flying back into town late last Saturday night, it was almost a shock to wake up the next Sunday morning feeling fresh.  I was able to arise unusually quickly, be on time for an 8:00 a.m. sound check at church,  and  successfully performed a solo that was new to my repertoire  at the morning church service, without being encumbered by my usual morning brain fog.  Then, I attended choir practice, which I hate to have to admit I have missed on most Sunday mornings for months.

In addition to feeling measurably better when I get up on recent mornings, the rest of each day has been notably different, also.  Last week I recounted my surprise about feeling good the next morning after walking so far that my lupus arthritis crippled by end of the first night of my trip.  I was amazed to wake up feeling good in exchange for having an expected massive lupus flare. I didn’t expect that result after abusing my joints so badly!

On every morning of the trip, and continuing since returning home, I have felt equally good or slightly better.  This week I worked five whole days, unlike most in the past few months.  I have had a pattern of taking one or more half or whole days each week as sick leave, grateful that my ADA accommodation is so graciously supported by my employer.  Usually starting work at 11:00 a.m. can even be a struggle, but this week, I was at work on two days at 10:00.  I would really like this to be my new pattern.

After working five full days, I felt unusually perky at the evening end of each day.  After stopping work at 7:00 or 7:30 p.m. and a 30 minute commute, I still felt energetic and cheerful while fixing dinner and visiting with my family.

Most Sundays...

Most Sundays, I  have struggled just to feel well in time to attend the 10:00 a.m. worship service, and usually missed most of the 9:00 a.m. Sunday School class sessions.  My husband usually attends these earlier activities alone, and I join him in time to wave hello as he plays the piano prelude to the 10:00 worship service.

Again, today I awoke clear-headed, not groggy.  I walked without stumbling to the kitchen and got my own cup of coffee.  Within minutes of taking my morning medications, I am sitting here ready to write, and will soon to attend a special 9:00 a.m. choir practice with my whole brain and body participating.  I am looking forward to a fruitful Saturday in the hours ahead.

I praise the Lord today, for it truly is a good morning!

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