Rheumatoid Arthritis update

I have been MIA again…it’s been a very interesting 10 days or so since I returned from my holiday.

Firstly, thank you all for your support and advice and inspiration!  There were moments where I felt like I couldn’t handle it, I was crazy to have gone so far from home with two kids and just me to deal with everything, and was afraid I wouldn’t manage the trip home.  Some kind words at moments like those are sometimes all you need to realise other people are doing harder things right now, and you just need to take a breath, pick yourself up and keep going.

And the holiday was a success…and I would say to everyone who is thinking about doing something big, something scary, something fun, something they need to do to rejuvenate their soul…DO it!  Be confident.  You CAN do it. You WILL find a way.  And you will do yourself proud.  Some of the people I have met through having Rheumatoid Arthritis are the strongest people I know, and inspire me every day to keep fighting.

So thank you…for lifting me up when I thought it had gotten too hard.  My kids had a great holiday, and we all have memories that will last forever.

When I returned from the holiday, I fell in a big heap for almost three days.  Utter exhaustion first…and then the mega flare for two days.  It was to be expected.  I think I was holding it all together by sheer force of will…the moment I was back at home, safe and sound, my body fell apart.

I didn’t mind that.  I expected it.  I understood it.

The strange part is what happened next!

Three days of mild symptoms.  Only mild pain.  Nagging, annoying maybe…but NOTHING compared to normal life!  And I had energy!  I could NOT believe how much I could get done in a day!  The brain fog lifted.  The headache went away.  I felt good.  Good!!!

I could exercise…hard!  I ran on the treadmill.  My fitness gave out long before my joints did!  I did group exercise classes that are normally too high impact for me. I traded Yoga for Step. I lifted heavier weights.  And I loved it!  I had muscle soreness that was far worse than the joint pain.  Sheer luxury!

And yes, I started to hope that it would last.  That just shy of the six month mark of Enbrel, maybe things were finally turning around.

And then on the evening of the third day a familiar ‘itch’ started in my joints. It quickly developed into the deep ache I am so used to.  Then the stabbing screw driver pains began. And then someone started twisting the screw drivers and wiggling them around in there.

Back to normal life.

The pain came back suddenly and ferociously.  I took as much endone as I safely could, and it didn’t even touch it.  I lay awake all night, quite literally.  No chance of sleep with pain that severe.  I just tried to breathe and meditate, and get through the night.  The next hour.  The next minute.

By lunchtime the next day, the pain hadn’t lessened at all.  But there was also the realisation that within just a few days of mild pain, I had forgotten how bad ‘normal’ is for me.  When each day gets a little bit worse than the last, when slowly you are dealing with more and more pain, you don’t notice it so much.  You deal with it, because you have to.  It’s just a little worse than yesterday.  Yes, you take more pain killers.  You’re aware of that.  But you’re still managing. You’re still living.  You’re still getting things done, even if it’s the bare minimum.

And you don’t really notice that your life has become a constant battle against severe, unrelenting pain.

And you don’t really notice how little you actually *do* on an average day.

But when the pain returns all of a sudden, literally overnight, you notice!  You notice in a big way.

You notice and you don’t cope.

So.  Phone call to rheumy.  Emergency appointment.

I saw her the following day.  I was in her office for about two minutes before she told me she was filling out the paperwork to start me on Humira.  Enbrel has definitely failed.

I had an MRI done a few weeks ago.  She looked at those results and tut-tutted.   Herniated disks, nerve impingement, facet joint arthritis and spondylitis.

She was unimpressed with the level of endone and ms contin I have been taking.  She told me it would be better to up my prednisone again, until Humira kicks in.  But I reminded her I can’t do that, because I have cataracts from the prednisone.  I cannot risk losing my eyesight, or even becoming seriously vision impaired.

I told her I am taking 1500mg of Naprosyn daily.  That is 1.5 times the maximum daily dose.  However, I have done this before, and I am a large person – around 80kgs (176 pounds).  She said I have to lower the dose to 1000mg per day, because my kidney function won’t handle it.  Also, the risk of ulcers is always there.

So she came back to oxycodone.  Slow release every 12 hours and immediate release for break-through pain.  So, every four hours.

She has nothing else for me.  I’m not sure how long Humira will take to be approved.  In the meantime, the pain is impossible…even though I appear to be going about my life as normal.

This is normal.

So I wait.  For Humira.  And hopefully, a new normal in a few months.