Rheumatoid Arthritis and starting to get back up again

Mostly when things go really pear shaped I shut up. I take cover. I don’t want to bring anyone down by writing a ‘negative’ blog.  This time I am trying to write through it.  These topics are uncomfortable and hard to write about.  I’m a stiff-upper-lip girl, and I like to be tough and don’t like people to know that I’m not coping.

That’s dumb.

I now don’t care if people think I’m weak.  I’m telling the truth.

Last night I kept my pain meds to a proper level.  The pain was still very bad.  I had an electric blanket under me, and a heated throw on top to wrap around whatever was aching the most.  Heat helps the aches.  Nothing helps the stabs.  So I just lay there on my back.  I couldn’t lie on either shoulder because they were both too sore.  If not the shoulders, the hips would have complained, anyway.  So lie on my back.  Lie still.  And try to occupy my mind.

One of the worst things about being in pain, is that you’ve been here before. You know it’s going to be awful.  You anticipate the awful.  You fear the awful.  You don’t know how long it’s going to last.  You know at some point your body will be too exhausted to stay conscious.  So you need to try and think about something else.

I have an ipad mini, which is far lighter than my ipad 2, but still too hard to hold when my hands are that bad.  So I have my little old Samsung phone.  I have’ Words with Friends’ and a few episodes of ‘Game of Thrones’ on there.  I played for hours with complete strangers.  Someone, somewhere in the world is always awake, and up for a game.  I bet the developers didn’t envisage how helpful their game would be to the chronic pain community.  Can’t say that I won many games though…

It’s a balance through the night.  You can’t sleep because the pain is too severe.  But at some point the exhaustion takes over. You sleep. The body rests.  Then the pain breaks through, and wakes you again.  You stay awake until exhaustion takes over…and this repeats all night.

Its 10am now.  The pain is improving.  It always gets better as the morning goes on.  Then there’s a peak and things start to deteriorate again.  I have a doctor’s appointment in 4 hours.  I’m not sure how I’m getting there.  It’s too far to walk.  All my friends are at work.  I will have to drive.  It’s only a five minute drive, about one kilometre.

It’s not my usual doctor, so I am nervous.  I have seen this doctor before, however.   I don’t intend to leave there without Endone.  I don’t want to spend another night like the last three.  I am afraid of another night like the last three.  I know that I am improving and I know there are far worse things, but I also know there is something that can help me get through the next few days.  Endone. So I want some of that while we figure out something more long term.

Today is about getting me under control.  Getting me functioning again.  I will make an appointment later in the week to talk longer term strategy.  This isn’t working.  I didn’t realise that Endone was as essential to me as it really is.  I thought I could tough out the pain without it, if I chose to.

I am so arrogant.  I really can’t.

I thought Arava was helping, because I made it down to 7.5mg of prednisone and was still functioning.  It’s actually the 50-80mg of oxycodone that I’m taking daily that’s keeping me moving.  Probably not the Arava.  No way am I stopping it, just in case though. I still think its helping some.

I just rang my rheumatologist.  She has a cancellation today at 3:45pm.  Incredible good karma!  (Perhaps not for her).   So I am seeing her today.  So now I have to get myself there. It’s a long drive, about 20-30 minutes.  And if my GP is running late, as he always is, it’s going to be tight.  But I am going to get to that appointment.

I know she will just give me a prednisone burst.  I was going to do that anyway.  We’ve been down this road, four, maybe five times already.  This cycle has been my life for the last few years.  She is always sympathetic. She does care, I know she does.  But she has doubts.   And while her apologies and sympathy are genuine, I am going to push her. Either she is going to apply for Actemra or not.  Or she’s going to tell me to my face if she feels she has nothing more she can do for me.  I deserve that much. Not just be given the run around.  I really can’t afford to pay for another appointment right now!  My phone messages should have sufficed.   Not to mention how physically difficult it is for me to get to her rooms today.

If she doesn’t believe Actemra is an option, then I really don’t think I have any option but to live on a higher dose of prednisone and just hope for the best.   I can’t afford more cortisone shots into my joints.  Each one puts me $70 out of pocket.  I need at least 8 joints injected.  I just can’t afford it.  It will have to be oral prednisone and all of the side effects and potential  long term problems that go along with that.

I have an appointment with my opthamologist in a month, to see whether my eyes have deteriorated further, remained the same, or improved.  They have certainly been flaring a lot more lately.  Along with everything else.  I have put myself on their cancellation list so that I might get an earlier appointment.  I want all these details now.  I need to make some decisions.  And I want as much relevant information as possible to weigh up and make my choices.

So I am going to bother all my doctors today.  My GP will tell me that I shouldn’t be taking this much pain medication.  My rheumatologist will comment on my lack of swelling.  I’m too tired to care.

What I care about is that I need to get a message to my kids so they know I won’t be home when they get home, and hope they have keys.  And I need to find someone to be on standby to drive me to my appointment in case I am on the downward slide by 3:45pm.

I am not missing that appointment.