January 4, 2017 status update

Christmas is over, New Year is done, and life has settled down.

I’ve been back on Xeljanz at the full dose for almost three weeks.  My last lot of liver enzymes were just above normal. Nothing crazy, but nevertheless a trend I want to see reversed, or Xeljanz with be a fail. I can’t afford that to happen.

I’m doing a lot better, averaging 5s and 6s most days on the pain scale, and I have much more energy.

But in reality, what does that mean.  What does it translate to, in terms of capablility?

I haven’t been to gym in over a week.

I just went into the City with the Chicklet to go to the Comic Book store. She’s a geek, I’m a geek, it’s her favourite place. Usually the Gamer boy would come too, but he was awake all night and needs to sleep.  It’s a very specific store, and it’s the only one in Canberra.  There are no easier, more accessible options.

The walk from the carpark to the Comic Book shop is around 300 metres I would estimate. I can walk about 100 metres before the pain climbs to 7s.  And I had to stop and sit down at 200 metres to rest.  I made it to the Comic Book store, but standing there, waiting for the Chicklet to browse and make her selections was pretty darn painful.  That was about 15 minutes, and the walk back to the car had to be done in stages, sitting down to rest a few times along the way.

It’s not a very wheelchair accessible store, but next time I will have to take it.  They have installed a ramp at the door where there used to be a step.  That means I can get into the store, I just can’t access parts of it.  I’ll be able to stay in the centre of the store while the Chicklet and the Gamer Boy browse the skinny aisles.  Doable.

I’m very excited by how well I’m doing, but in reality, that’s pretty poor.  Because even when I’m doing ‘well’ I can’t walk more than 200 metres.  And if I do walk, the pain is pretty full on.

All in all, we were out for one hour and fifteen minutes.

Now I’m home and have been for half an hour. I have to lie down, my feet, knees, hips, lower back, shoulders, wrists and ribs are all quite pissed off at me, and now insisting that I do nothing.

I don’t want to do nothing.  I want to keep cleaning and throwing things out and get to painting the study.  But I can’t. I have to rest.  That pisses me off.

I need to mow my lawn.  Maybe I’ll recover and be able to do that.  Or part of that.  Probably not.  I want to go to gym. Again, maybe. Maybe not.

I’m not in control.  I have to wait and see what my body lets me do.  That might be my day done, already.  I could take more oxycodone, and then in an hour I will be able to walk and maybe fold some washing or mop some floors.  But I’d be taking it two hours ahead of schedule.  Not a great idea.   I’ll pay for that tonight.

But the nights are horrid anyway. Pain at night always gets to an 8, sometimes higher.  I don’t get much sleep. I’m averaging five hours per night.  And that only happens with 30mg of oxycodone and 10mg of Valium.  And usually 2 glasses of red.

Not a good habit, but otherwise I wouldn’t sleep at all.

So that is, in fact, pretty damning. When you look at the reality.

Yes, Xeljanz has given me a solid 30-40% improvement.  But where I was at a few weeks ago was a pretty bad place.  Constant 7s and 8s.  Bedridden.  Barely able to make it to the bathroom on time.  Numbness in my legs and arms.  Abdominal pain, often severe.  Searing headaches.  Blurred vision. Constant head buzz, memory problems, muscle weakness.  A non-person.

The pain was beating me. I was starting to take it out on the kids, something I just don’t do.  I was drinking, even knowing that my liver function was bad.  I was taking risks, being reckless.  Very clear signs that I wasn’t coping with the pain.

I have a self-destructive streak.  And when the pain gets too much, and you throw in the Christmas stress, the very worst parts of me are unleashed.  But I don’t hurt other people, just myself.

That’s why I started taking the full dose of Xeljanz sooner than recommended. I knew the pain was beating me. And I know what I’m capable of.

Reducing the pain back to bearable levels was paramount.  And the result is, I have a half-life back again.  But my liver enzymes are rising.  I’ll need to get more bloods this week to see what’s happening.  I’m hoping they will be within normal, or close to it.  I’m not keen to start a new treatment, even though Xeljanz is nowhere near good enough.  And if Xeljanz is a fail, along with Enbrel, Humira and Orencia, then I am down to my last biological.  And Xeljanz works far better than any other treatment has. Far better.  Without it I go back to the very bad place, which will become the dark place.

But for all the benefit that Xeljanz gives me, I am still on 15mg of prednisone, which is far too high.  And on 70-90mg of oxycodone daily.  All of that is bad.  Very bad.  My rheumy knows it, but she’s out of town for two weeks.

For me to be on all of these medications and still have this poor level of function and be in this much pain is pretty suckworthy.    But my only option is to put a smile on my face and make the best of it.  Be satisfied, because while most people would find this unacceptable, I know it gets worse than this.  Much worse.

In other news, I’m back on the top 8 elimination diet – no wheat or gluten containing grains, no dairy, no eggs, no corn, no soy, no nuts, no seafood, no meat except chicken.  I’m finding it easier to swallow, I haven’t had a food impaction in a few days, but I still feel like I have a golf ball permanently lodged in my throat.   I’ll have to stick to the diet for 3 months and then have another scope done.  The slowly start introducing allergens.  Again.  The steroids should be suppressing the allergic reaction, but I am clearly allergic to more foods than I was this time last year.  Or there are environmental allergens.  So that’s not to cheery, either.  But I can stick the diet.  I’m making lots of banana and raspberry smoothies. Not because they have magic healing properties, but they taste good and they’re easy.  So it’s not all bad.

I can always find an upside. And I think because I focus on the upside so relentlessly, few people understand what my life really looks like.  What it feels like. What I’m capable, or not capable, of.

But I have a choice:  be pitiful and sad and then maybe I’ll get more sympathy and understanding – maybe. But I’ll have to be miserable to get it.

OR, be happy.

No contest.