Life is Good

First, thank you so much for the kind words and support.  It really helps.

***

Last weekend my brother came to visit and I showed him my notebook and database.  He thinks I keep better records than the doctor!  Of course that’s not really true (I’ve seen my doctor’s chart).  As I’ve been plugging my notes from past appointments into my database (testing to see which parts need tweaking yet), reading old symptoms reminded me of how truly awful I felt for the first couple years.

There’s nothing like a quick review of the past to highlight how incredibly well Enbrel is working for me.  Getting all the sugar out of my system helps, too.

I spent years planning my errands so that there wouldn’t be too many at a time.  “Pace yourself” is a lesson learned early on (even before an RA diagnosis).  Three stops was my max, then it was time to head home and take a nap.  Going out to dinner was never an option; lunch maybe, but never dinner.  I tried not to make many commitments, because I couldn’t count on having the energy to follow through, but wouldn’t let people down if I’d given my word. 

Things did improve after being diagnosed.  Every new DMARD helped my joints be a little less sore, and I wasn’t quite so exhausted, but I was still tired all the time.  Since the addition of Enbrel, I’m down to only one joint that really bothers me (yes, my rheumy finds that others are tender, but nothing like before).  ONE!  The thing I love though, is having energy again.

Energy!  Yes!  I’ve been able to take my kids places and do things with them.  I committed to teaching Sunday school, because I know that I’ll feel well enough to do the prep and still show up to teach.  We recently went to a wildlife park and spent four hours walking around.  I felt such a sense of victory!

This morning I took my kids ice skating.  Truth be told, I was a bit hesitant about this one.  Given the course of this disease, though, I figure I better do all the living I can while I have the chance.  I had fun, and the kids were delighted that I skated, too.

My orthotics fit inside the ice skates and worked perfectly.  I couldn’t lace my skates up tight enough, but after all those years of tying kids’ shoes for them, they were happy to return the favor.

As I sit here, in addition to the shoulder issues, my hip is sore and my knees are bruised.  Yes, I fell.  Twice.  And do you know, I love knowing that these joints are sore because I was out there living instead of sitting on a bench watching everyone else.

Visiting with the staff as we were leaving, I commented that it’s years since I’ve skated.  It’s always been so much fun.  The staff said, “It’s never too late.” 

They’re wrong.

We never know what life is going to throw at us.  Someday it might be too late.

I want to do the things I can while it’s still a possibility.

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6 thoughts on “Life is Good

  1. What a wonderful post, WarmSocks. All the effort you’ve put into tracking your symptoms, doc appts and meds has really shown just how much the course of your RA has improved — something that’s not always easy to see as we live day-by-day, month-by-month dealing with fatigue and pain in addition to everything else life tosses at us. And the other efforts you’ve made: eating more mindfully, cutting out sugar, and pacing yourself carefully have obviously had good effects, as well.

    I’m so pleased that you’re feeling so much better overall (shoulder excepted). I also went ice skating with my daughter when she was small, and I did it with feet or knees that were flared at the time. I just didn’t want to miss out, you know? (BIG smile).

    Thanks for the inspiring and positive post. Your words and your attitude are good for all of us.

  2. Such good news! So overall soreness and pain in other joints is pretty much gone? Is the energy peaked for the majority of the day, or just so many hours? Just curious. Did read an abstract stating that Enbrel and Humira are showing the best in meta-analysis of various studies (not head-to-head), over Remicade. Hope this holds out for you. Also read some abstract about injecting the shoulder with synvisc or some such. Perhaps this could be an option for you before considering surgery.

  3. I’m so very glad to hear that Enbrel is helping so much. That’s wonderful news!

    And, I’m very happy you got to go skating with your kids. Love the photo!

  4. Thank you.

    Wren, you know exactly what I mean, then, about balancing being careful with the joints to not inflict damage, versus being “normal” for our kids.

    Chelsea, yes the overall soreness/stiffness is gone. The energy lasts all day – I can get up at five and not go to bed until ten, even after an active day. I’ll see my PCP next Friday and see what he says about the next thing to try for my shoulder. In the meantime, I’ll read about synvisc – thanks for the tip.

  5. I hear you on wanting to do things while you can.

    Just a couple months before I came down with my secondary pain condition, my parents and I were at a national park up in the mountains. My mother isn’t a very physical person, and doesn’t do well at altitudes. Our camp site was higher than we expected, and there wasn’t much to do that didn’t demand a mile or more of hiking – completely beyond my mother’s abilities.

    Because of things we’d booked (whitewater rafting) and a road closure, my dad and I ended up spending 2 days only seeing my mom and breakfast and dinner. I desperately wanted to climb to the top of one of the mountains in the park – there was a parking lot at the base of a trail that had you most of the way up there. My mother was horribly upset at feeling abandoned and left alone in the camp site while dad and I went off and did things.

    It feels almost prophetic, in retrospect…my mother and I had something of a fight, and I pointed out that this might well be the last time my joints were healthy enough and i was in good enough shape to climb to the top of a mountain.

    I didn’t get to do that climb, and it’s unlikely that I’ll make it to the top of a mountain under my own power at this point. Not the sort of thing one wants to be right about.

    ~Kali

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