Still Hanging in There

Clearly I lied, and I haven’t blogged regularly (again).  Again, I have no good reason except that I haven’t had much to say.  People ask me how I’m feeling, and all I can say is “today is a good day” or “Hanging in there.”  Even on my good days, there’s pain, there’s making accomodations for my limitations.  There’s always an awareness of my diseases lurking in the background.  Frankly I haven’t wanted to blog about that and repeat those things to you because chances are if you are reading this you either a)know exactly how I feel and are tired of it too or b)know me in real life and have to deal with complaints there.

But really, I’m hanging in there.  The Enbrel/MTX/plaquenil combo seems to be just what I needed.  I am down to 7 mg a day of prednisone (woo!).  This Saturday I am going down to 6mg.  Except for withdrawal symptoms, I haven’t had much problem going down on it, in terms of joint pain.  So that’s been pretty amazing.   The fibro pain is still pretty icky, but I am not sure what to do about that.  We’re at the top of the dosage for lyrica.  Dr. K thinks I just need to get more active.  So..I’m trying. I’m trying to walk more.   Started physical therapy again for my back, which seems like it’ll be good, too.  I have a great physical therapist, and I already feel like it’s been worth going, after one session.

So, back to walking.  I’ve discovered this really interesting thing (interesting to me anyway!).  A couple of months ago I got a pedometer so I can see how many steps I take a day, and I pay close attention to the number of steps and how I am feeling.  I have found a direct correlation between how I feel and how much I walk.  In fact, I now know that if I take under a certain number of steps, I am going to feel crappy the next day.  So I have a baseline now for how active I have to be, which has been really helpful. And it’s also been great to feel like I have control over one thing that can make me feel better.

The trick has been that I live in Wisconsin and it’s cold outside!  So getting enough steps takes some creativity, lots of pacing around my house.  Lots of short walks with the dog.  I am toying with getting an elliptical machine so I want to have to go outside but I can still be active.  Anyone have suggestions?

Next week I see Dr. K again.  And then we’ll see where things stand, I guess.  Hoping you are all hanging in there, too!

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When Physical Therapy Isn’t Therapeutic

It is safe to say that my physical therapy office is not going to be on my team.

I liked my original physical therapist (K) at my first visit.  She seemed helpful, interested in my well-being, ready to help me gain some strength and eliminate some of my pain.  I was pretty optimistic after that first visit, honestly. Which is maybe why I’m bummed now.

At second visit, I liked K a bit less.  She spent most of her time we were together doing paperwork while I was on the tens unit or on the recumbent elliptical (which is a good machine for people like me).  But we did a few strengthening exercises and she sent me home with homework (three of the exercises twice a day ten times each).

So, today, third visit, I am not having a good day, pain-wise.  I didn’t want to go.  Couldn’t find convenient parking.  Walk in and K says, “I can’t see you today, so A will see you.”  Fine.

But A doesn’t know anything about me.  First few minutes of session is her asking me questions I answered on first visit.  Ok, fine.  I can deal with that, I guess.  She puts me on a bike-type machine which was much less friendly to my joints.  Fine. I can deal, I guess.

But here’s where I start to get pissed.  She says “So K went over bio-mechanics with you last time, right?”  Me: “What do you mean?”  A: “Like the right way to stand, the best way to sleep, ways to get up.”  Me: “No.  But I would really like to know those things.”

Evidently K’s notes indicated we covered those things.  We didn’t.  I went to physical therapy partly for that information, and I am so upset that my care is being compromised because K was lazy and took the easy way out by writing that she had covered something she hadn’t.   Lucky for me, A did go over some of those things (unfortunately no new information).  A also add some abdominal exercises to my routine, which I am happy about.

But then at the end, I am confused again.  She recommended I do my exercises “Maybe every other day.”  K told me twice a day.  Which is it?

Physical therapy’s purpose is to help me, right?  But how is helping to get inconsistent care?  To get inconsistent information?  To get therapist’s who don’t actually give a shit about my outcomes?

Arg.

I have three sessions left that my insurance will cover.  After that, I guess I need to consider whether I can afford to pay for my own physical therapy at a decent therapist.

Arg again!