Monday, August 6, 2012

Readjusting Expectations

I had an appointment with my rheumatologist today. When I see the Dr (vs. the NP, who I also adore) it's such a different experience.
I. Freaking. Love. My. Rheumy.
He listens, listens, listens to me. Oh, and he HEARS me! Plus, he is such a sweet little guy, and surprisingly very spiritual. And amazingly supportive.
I would trade all of my shoes to keep him. All of them.

We had a nice talk today about my breastfeeding (20.5 months so far!), my limited medication choices while breastfeeding (pitifully few), and how that is impacting my pain (suuuuuuuucks).

I explained to him that I'm readjusting my expectations and altering my pain threshold accordingly.
He got it. Thank God he did. Very few do.

((Yes, we are "Extended" Breastfeeding. I believe my child will wean when he is ready. We also have issues with solids that are extremely complicated, including my son having an extreme reaction to anything that comes from a cow (milk, beef). Heck, he can't even touch something that contains dairy without a blister forming. a blister, folks.
So he nurses. It's working- he a massive kid at 35lbs and over 37.5inches! And I wouldn't trade my nursing relationship for ANYTHING!))

OK. Back on track. So I am breastfeeding and that severely limits my med choices. I am learning to evolve with my pain and my diseases, which are currently flaring. What I considered painful 10 years ago is not even notable today. And even what drove me to a Vicodin 3 years ago is merely an annoyance today.
My Lupus is my Lupus. My Sjogren's is mine, too.
***But*** My Life is MY LIFE as well.

Today I saw a little phrase on a little piece of paper on the wall in the exam room. Here is my recreation of it, and I will be posting it around my house as a reminder:

Which is absolutely true.
I accept that the best we can do is "manage" these diseases.
I have accepted life with pain.
I am OK. I am coping. I know it's going to be there. I am prepared for it. I can handle it.
Well, most days I can handle it. When I can't, I call in reinforcements, take a pill, re-evaluate, and regroup.
I am determined to not be depressed about constant pain. There are many out there who are far worse off than I am. I can walk, jog, carry my giant toddler, play with him, chase him, cook for my family, and clean the house a bit. Now, I don't do all of those every day, but most weeks I do all of them at least a couple of times.
Don't get me wrong, I have fewer SPOONS than I had even a year ago, but I am managing them well (most days).

But I like my new adopted motto.
I'd rather Lupus and Sjogren's go the eff away, but since they won't, I will readjust my expectations and I'll be fine.

Luckily, when I am not at 100%, my little guy is happy to play a rousing game of DestroyTheKitchen or EmptyOutMommy'sTupperwareDrawers. Which are fine as long as we can play my favorite game after --- LetDaddyCleanItUpWhenHeGetsHome.
I try not to play the last one too often, though.
So I leave you with a pic of me and Mildly Amused Baby.
Because I can. :-)
And thanks for listening, Interwebz.