The difficulty of having a glimmer of “better” for only a brief time

When I came back from Philly I had an action plan.  The dr made sure I took careful notes and knew what to do first, second, and so on.

My first step was 2 weeks of prednisone to determine which symptoms would be relieved (because they were due to inflammation) and which wouldn’t (because they were due to some other part of other disease process).  I’d been given other things to use for dry eye relief and a new medicine for dry mouth and an immunosuppresent to treat the overall disease activity, but the prednisone was the first step.  Be on it for 2 weeks, see what went away and then see what came back after it was over.  Then on to the other treatments.

I went straight to the pharmacy from the airport and started the two weeks that afternoon.  It was from Dec 17 – Jan 1 (the last two days were a taper, so Dec 30th was the last full dose).

The result – the fatigue, brain fog and fine motor control symptoms had marked improvement.  I didn’t take a nap for those entire two weeks.  I didn’t feel like I was dragging through deep water to get through my day.  The joint and muscle pain and the dryness were not affected at all.  But I had energy.  Consistently.  Each day.  For the first time in YEARS!

And the timing could not have been better.  It was the holidays – always a busy time.  But more so than that, my friend lost her son the Sunday before Christmas.  My own kids were with their dad for the first part of Christmas break – from the day school got out until Christmas day – so I had time.  No dance, boy scouts, not even hanging out with the kids at home spending down-time together.  I had nothing planned.  And I had energy.  I could be there for her.  I could help with the video for the service.  I could order them pictures of their family and son that I’d taken over last year and a half as “their photographer” as they call me.  I could do what little I could to help them in any way possible.  I was hit hard by the emotion and tragedy of it all – as all of her friends were – but I could function.  I could work all day at work and then go spend the entire evening with her combing through her pics and mine to find the ones to use.  I could stay up late working on the video.  And most importantly to me, I could do it without my thoughts being pulled back to the struggle of dealing with my fatigue – I didn’t have to be constantly reminded of my own limitations due to my disease – I could focus on her and her needs and it felt wonderful to be able to do that.  To be selfless and there for someone without having to fight through limitations or even be reminded of them.

These may seem like things that I should be able to do anyway – it’s not like I was running a marathon or anything.  But even with the heaviness of the sadness and the grief for my friend I was able to be up and functioning for longer hours that I can normally handle on a daily basis.  And no matter how much I try to not think about it or focus on it or let it interfere with things, when I am experiencing the fatigue it is always there.  Other than for short periods of time when I might be engrossed in something, it is always there and present in the back of my mind because it does always impact my day and my activities.  There’s no way that I could have gone days without being reminded of it and having to deal with it had I not been on this two weeks of prednisone.

And there had been other benefits outside of my ability to focus on a friend in need – I was more like myself.  I was more patient, kinder and during the first week I was on it (before the heartbreaking week), I was in a phenomenally good mood.  I noted it and appreciated it, but it wasn’t until the night before last when I was laying on the couch at 8pm desperately wanting to go to bed and irritated to be feeling like I was and my son was doing something that was annoying me and my husband was asking me questions as he filled out a form and my daughter was doing something and I just was cranky and unhappy and short with all of them that I realized how much I missed my “old self.”

As I lay in bed reading before I went to sleep after the kids were in bed I wondered why I had been in such a cranky mood – nothing that any of the other people in the house were doing warranted such a mood – nothing in my day had contributed to it – it hadn’t been a bad day.  Nothing particularly noteworthy had happened – it’s simply that I was fatigued, in pain, feeling all my symptoms back and in full force.  I’m not always cranky and in a bad mood like I was that night, but it is definitely easier to feel annoyed and to feel like I just want to be left alone.  I’m quicker to get to a cranky mood than when I don’t have to deal with all the symptoms on a constant basis.

It was one thing to have this all come upon me slowly, increasing over the years.  I didn’t notice just how much it changed my personality as when I had two weeks of close to my old self (yes, I still had aches, pains and all the horrible dryness – but taking away fatigue and brain fog and fine motor control issues went a LONG way towards making me feel more like my “true self” than I have in a very long time).  Two weeks of feeling like “me” with a crash back to full symptoms within a few days of stopping the medicine is hard – it’s having a glimpse of something wonderful and then having it ripped away.

So now I’m onto “step 2” – getting a neuropsych evaluation to see if the brain fog that I experience can be quantified with a baseline evaluation that then we can compare any results of future treatments.  After that baseline evaluation is completed then I’ll begin the Imuran – the immunosuppresent that will hopefully help all of the Sjogren’s symptoms and disease activity.  It can take 6 months or more to see the full effect of it.

Hopefully this immunosuppresent can bring back that “glimmer” of “me” that I experienced during the last half of December.  If not, it will be onto the next thing to try.  But like I said before – I haven’t given up.  I’m still looking, still trying, still holding out for getting as much back of “me” in my “new normal” as possible.