Rheumatoid arthritis, Enbrel and the next set of choices

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painI’ve been quiet lately again.  I think most regular readers of this blog will know why.

Enbrel isn’t working. Or not working well enough.

I’ve taken 9 shots…I will take my 10th tomorrow.

I haven’t wanted to write this post, because I don’t want to brutally, coldly, analytically look at my results so far, and admit them.  Tomorrow I see my rheumatologist.  And while I love my rheumy, seeing her always brings some anxiety. A reality check. A taking stock.  A no-holds-barred look at where I am with my rheumatoid arthritis.

I’m a very positive type of person…I’m optimistic.  To the point of denial, sometimes.  I don’t get bogged down in setbacks (usually) but as we all know, Rheumatoid Arthritis is a serious disease.  It is painful. It is debilitating.  It is disabling and life limiting.  Even the most optimistic, glass half full type person hits the wall sometimes.

And the last two weeks, I’ve hit the wall.

Why?

The pain is much worse.  On 15mg of prednisone my life (on average) looks like this.

15mg prednisone, 1000mg Naprosyn, plaquenil

2 moderate/severe pain days per week.

3 moderate pain days

2 mild pain days

2 sleepless nights, where I lie awake most of the night because of pain.

1-2 endone (oxycodone) per day.  Targin (slow release oxycodone) or ms contin (slow release oral morphine) a couple of times a week – when I really need to sleep.

Gym 5-6 times per week.

Centergy (yoga/pilates) twice per week.

Power (Pump – lifing weights to music) twice per week.

And 2 or three cardio sessions – Spin class, either 30 minutes or 45 minutes.  Or cardio machines – cross trainer or recumbent bike.

On my very best days, I even run on the treadmill.  All of this exercise *causes* pain…but the benefits it gives me (muscle strength, fitness, cardiac health, mood boost) outweigh the pain.

It’s pain I can work through.  That doesn’t mean it’s mild pain – we RA chicks are pretty tough!

I also have 1 major knock down flare per month – 3 or 4 days of being bedridden by severe pain.  Some months it’s twice.

So that’s still a life that is severely impacted by Rheumatoid Arthritis.  That’s a life spent dealing with a lot of pain.  But that is still a functional life.  A useful life.  Dare I say it, even a happy life.

So where am I now?

10mg of prednisone + Enbrel.  Naprosyn.  Plaquenil. 

4-5 days of severe pain days.  Knock down days.  Full-body-mega-flare days.  Completely-unable-to-function days.

2 days of moderate pain.

I have been to the gym three times in the last two weeks. Twice it was a total fail.  I was unable to finish the class.  The third time I just sat on a recumbent bike and made the wheels go round for 30 minutes.  I guess I just wanted to be in an environment that I enjoy. My (previously) happy place. I ignored the fact that I wasn’t really exercising as such. I just needed to be there.  Out in the real world.

I don’t sleep at night unless I have taken slow release oxycodone.

I take 4 endone daily.  2 slow release oxycodone.  Just to function on my moderate pain days.

I am not exercising. I am not writing. I am not working.  I am not functioning.  I am just covering the essentials – keeping my kids fed, and clean school uniforms available.  I am not living.

I’m not taking my kids out.  I’m not helping them with their homework.  I’m not fun to be around.  I have needed to ask a friend to pick up my daughter from school.  (My son now takes the bus).  I’m not calling my friends, because I don’t want to complain to them.  They feel neglected because I haven’t been in touch, and asked them how they are doing.

I look exactly the same on the outside.

I make small talk if I run into an acquaintance at the store.  When people ask how I am, I say “Good! And you?”

But this is the truth.  I am not living.  I am existing.  I have two friends whom I admit this to.  And, of course, my fellow arthritic chicks.  (And arthritic guys? )

So this is where I am.  It’s not a good place.  Where does it leave me?  With some tough choices.  I’ve raved on a little much, so I’ll layout my choice in my next post.  Back in a bit…

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