June 15 – “TNF”

 

 

Well then.  Yesterday was my regular three-month trip to the rheumatologist.  It's been a rough three months, honestly, in the pain department.  I do OK during the day when I can consciously focus on fighting it or ignoring it, but it has been waking me up at night, so I don't get as much sleep.  Which of course means Chris doesn't get as much sleep.  And as I told the rheumatologist, "When Mama's not happy, nobody's happy."  Actually, she does a great job encouraging me, even in the middle of the night. 

 

So the next step in treatment appears to be morphing into a strange new realm.  The new medication he wants to try is in the family of TNF inhibitors.  It stands for tumor necrosis factor.  Has something to do with counteracting the inflammation process, I think.  I couldn't just take it right away, though.  He had to do a bunch of blood tests – eight vials – first to make sure I don't have tuberculosis and then to make sure that my liver is not compromised.  And the tech who drew the blood had to stick me twice to get it all.  First time that's ever happened.  Ouch.  The other risks involved have to do with increased risk of infection and lymphoma.  So am I understanding this right?  It's a trade-off between less pain and greater risk of getting cancer?  That's one to think about.  Oh, and did I mention this new and improved drug is taken in a shot?  There are two possibilities.  One is a shot once a week that I give myself (read here "that Chris gives to me").  The other is a shot that she gives me once a month.  Oh, and the other "minor" detail he mentioned is that the shot "hurts like …" well, you get the idea without hearing his actual words.  Great fun to look forward to, right?

 

In the meantime I get to increase the dose of prednisone (a.k.a. steroids) that I take every day.  That was not good news as far as I was concerned.  I hate that drug.  It does give pain relief, but inevitably I don't sleep much.  At least the increase is just a slight one.  Maybe it won't keep me awake too much.  I'm wondering if the blood tests will come back and I'll start on the new stuff before or after camp.  It's always an "inspiration" to the body to spend a week away from home in a different atmosphere (literally – camp is in the mountains of New Mexico), following a different schedule (and camp schedules are always unpredictable), and facing different stressors (A week with teenagers.  At least our kids are the greatest).  Bring it on. 

 

Psalms 3:5 says, "I lie down and sleep; I wake again, because the Lord sustains me."

 

Father, I like the simplicity of that.  Sustain me.  Amen.