Category Archives: Rheumatoid Arthritis

Information about Rheumatoid Arthritis and posts about my journey with it.

Upgrading My Life 101 – I Control the RA

Posted on by dreamzncolor
Interior of doctor's office, Mid-City New Orleans.

Interior of doctor’s office, Mid-City New Orleans. (Photo credit: Wikipedia)

Today’s lesson.  What did I learn today and how did it improve my life?

Today I’ve learned that I really need to count on myself and hold myself accountable.   I messed up and now I’m paying for it.

For quite some time, I’ve been managing my RA really well.  I was always worried the day would come, in which I found myself in pain again.  The thing is, I didn’t think it would be my fault.  In this case it is.  So what happened?  In short, I relied on others to keep me in check with Enbrel, instead of myself.

Here’s the story:

Last weekend, I realized it was time to take my weekly shot of Enbrel.  To my surprise, when I reached in the fridge to get it, there was no Enbrel to find.  I was out.  I’ve been late a couple of days in the past, and it didn’t really affect me much, so the worry wasn’t really there.  I made the call to Caremark and set-up a delivery for the coming week.  No problem right?  Wrong!

A couple of days go by and I receive a call from Caremark saying that since there were no refills left on the prescription the doctor would need to be faxed.  I start to panic a bit here, because I know I haven’t had an appointment yet this year and they would probably want me to come in.  However, the doctor would want labs done and with results in the office when I had my appointment.  We’re talking at least a week without Enbrel here, by the time it’s all said and done.  At least I thought.

As suspected, I receive the call that the prescription wasn’t refilled and I need to call my (RA)doctor’s office.  When I do, I’m surprised with an opening the very next day.  However, I don’t have scripts for blood work and it wouldn’t be processed by then.  I explain and the nurse tells me the next opening isn’t till August 2nd.  WHAT?!?!  At this point I’m freaking out!  Then, I begin to explain the situation.  She says she may be able to give me a couple of samples when I come in for scripts for blood work.  With a huge sigh, I’m relieved.  The office is closed on Fridays and they had to get my record, so I was going to have to wait till Monday.  On Monday, I would be without Enbrel for a week.  That’s not too bad.  Once again, or so I thought.

Monday comes, and I’m not doing bad.  A little sore, but nothing major.  I go to the office (which is 30 minutes away) and find that a different nurse is working and received no note about giving me samples.  Then she tells me they were out of Enbrel samples anyway.  WHAT?!?!  I could’ve cried at this point.  She did say they were expecting more to come in during the week.  That was good, but I was scared.  With two kids and summer flying by, being in pain was the last thing I wanted.  Sadly, I took the scripts and went on my way.

Tuesday morning, stiffness begins to set in.  So what do I do?  Move all day long.  For fear that if I sat too long, my body would attack.

Wednesday morning, OMG!!!  How did I live like this?  Less moving, more disappointment.  Phone call to the doctor’s office.  No samples yet.

This morning, I can’t believe I was so stupid!  All day, I’ve wanted to lay down.  My elbows feel like they’re stuck at crooked.  My knees are tight and hot.  That general achiness all over.  All because I didn’t take care of myself.  I’m supposed to count on myself.  I know better than this!  Still no samples.  Office isn’t open on Friday, so I may get something on Monday.  I may not.

I do feel there is another source for part of the blame.  TELEMARKETERS!!!  Why?  Telemarketers call our house from 7am to 9pm every day.  Even on Sundays.  We hardly answer our landline anymore.  In the past, when Caremark called to remind me it was time to refill, it showed up on the caller i.d. as Caremark.  I think they got passed off as another telemarketer this time.  In the end, it’s still my fault.  I would love to get them to stop though.

How is this lesson upgrading my life?  In no particular order:

First:  I’m going to find a way to end calls from telemarketers or at least greatly reduce the number of calls we receive in a day.

Second:  I will set reminders in my phone to alert me to make that important call.  As well as write them on my calendar.  No more relying on those reminder calls to take care of things for me.

Third:  Being reminded of the pain I could so easily be in again without medication controlling my RA, I’m going to remember to not take moving for granted.  It sucks to hurt like this.  I feel the RA trying to box me in again.  I feel for all of those out there still struggling to find the right regime for them.

Fourth:  Swim for hours, take even longer walks, and play with my kids till we pass out from exhaustion…when Enbrel makes my joints happy again!!!

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A Reminder For Those With RA

Posted on by dreamzncolor

A current picture of my right hand.

1.   Raise both arms above your head and stretch out slowly and reach as high as you can.  Taking a deep breath in as you raise your arms.  When you reach the peak, breathe out slowly.  Keep your back as straight as possible.

2.  Try to touch your ear to your shoulder…hold it.  Now the other side.  Next put your chin to your chest as close as you can and hold it.  Bring your head back and look up above you, now extend back even further to see behind you.   Turn your head side to side, trying to make your chin parallel to your shoulder.

3.  Turn your torso to the left and right.  Really try to push so that you can see behind you.  Next, put your hands straight out in front of you and tuck your head down then reach.

4.  Put your hands in prayer position in front of you and slowly bring them in toward your chest.  Keeping your hands in prayer position, raise them up and then down slowly.

5.  While sitting, and your feet flat on the ground, lift your heels off the ground so that only your toes touch.  Then rock your feet so that your toes are off the ground and now your heels are there instead.  You can do this one even as you’re sitting and surfing the net or checking email, etc.  Try to do this for at least 3 repetitions of 10.  I feel lots of popping when I do this, but it feels good as well.

My wrists are mostly fused, my fingers have deformities, my ankles have lost a lot of range of motion, and my neck appears to be permanently stiff mostly because I wasn’t doing what I should’ve been doing.  It doesn’t take long, and it’s a good habit to keep stretching.  There are many  stretches you can do.  Stretching to reduce stiffness can be very beneficial.  Hope you feel even a little bit better.  Feel free to add stretches you like to do.