It was our Burns Night dinner, and we had pudding.  I mean we had pudding, but not merely in the British sense of the word.  I’m talking Jell-o instant vanilla, here.

I love pudding.  I love anything I can eat with a spoon.  I have a deep personal attachment to spoon-foods, and I have no earthly idea why.

So we sat, a few weeks ago, inhaling the Jell-o instant pudding that Strand had concocted.  We were literally moaning as we shoveled in the vanilla spoonfuls, and asked each other, why don’t we have pudding more often?

None of us knew.

I was still thinking about pudding yesterday (and spoon-foods generally) when I had sushi for lunch, and again was cognisant of how hard it was on my hands to use chopsticks.  And what a jerk I was being to everyone around me because I was so frustrated, fed-up, and exhausted by my bad joints and accordingly, my inability to the the things I wanted to do.  Particularly when those “things” were as simple as “using chopsticks.”

I was hurting, and as a result, I was, and am, being a difficult person.  Not listening.  Being argumentative.  Acting selfish.  Yammering about anything but the difficult reality of the situation at hand.

I tend to act this way when there are things going on with which I do not want to deal.

For the last few months, I’ve been having a bad flare-up of my rheumatoid arthritis.  As to the disease itself — the inflammation and medication are both horrible.  And as to this flare up, the experience has been less than pleasant (to put it mildly), and I’ve been trying to bribe my rheumatologist into cutting off my hands — to no avail, I might add.

I am very obsessed with being a strong woman (in case that you hadn’t noticed that)And with being able to play with the boys, and getting back up when I’ve been knocked down, and surviving, and living to recount the things that have happened.  Telling the story of life as a divorcee is easy because there is a beginning, a middle, and an end.  There are happy resolutions of individual stories within the main plot.  Even telling the story of life as a recovering anorexic is a (mostly) happy one — because it is a tale of hope and survival.

But to layer the autoimmune disorder narrative in with the other two is just depressing.  There is no happy ending; no real resolution.

That it is so painful to button clothes makes me feel weak.  That it is so difficult to snap the dog’s collar or handle his leash makes me feel like I cannot take care of myself, or of him — and it is most important for me to be able to take care of him.  That it is excruciatingly painful to hold utensils other than a spoon is scary.  That I have to make choices about medications that will affect my fertility, or that will have insane side-effects…it’s all quite overwhelming.  How is it that I should be doing these things?  Don’t may parents have to sign a waiver or something?

But I wear different shirts, and I do get the dog put together, and we move on.  I power through meals for all the reasons that I should (all of them).  And occasionally, I drop things, and I break things I used to be able to hold on to, and I have to make modifications to my life I didn’t think I’d have to make.

It all makes me…a bit cranky.  And I’d sort-of rather you think me difficult or selfish or vapid than as someone who can’t take care of herself.  I’d rather prattle on about bad dates or former lovers than delve too deeply into debating the merits of methotrexate and/or whether I should consider switching biologics.

This flare will subside, I know it.  My treatments will change, and we’ll get this under control, and life will move on.  But I can generally fix things if I put my mind to it; I can achieve what I want.  I come up with the most batshit crazy schemes and bring them all to fruition.

I can’t fix this.  People have begun to take notice of how bad my hands look, and how much I am struggling.  I am weak, and broken, and human.  And that’s not necessarily a bad thing to be, however, right now I am perhaps not the best expression of myself, let alone not the best weak, broken, and human version of that.  Please forgive me.

So, while this isn’t an invitation to discuss my RA any further, you are still welcome to come over for pudding any time.


Leave a Comment

  1. Generally I dislike spoon foods, chocolate mousse excluded (which I’m happily making myself sick on as I type… overindulging again). We have to find comfort where we can, right?

    My heart ached reading about your hands and the pain you’re living with. Words are inadequate, but I’ve nothing else to offer. I hope you will find relief soon! Obviously you’re a strong woman, and sometimes it takes an even stronger one to ask for help. I would find it very difficult to lose my independence too, but there’s no shame in needing others. Wishing you more peace and pudding! xo

  2. Just know in the painful moments where you feel alone in this, even if we don’t understand RA (or have any experience with it) you are on the minds and hearts of others.

    p.s. Please tell me that you’re secretly a spoon-hoarder. I stole one from the beer fest we were at the other night purely because I liked the heft.

    • Um, spoon hoarder…girl, you have NO IDEA. You just hit the nail on the head as to why there is this massive joke among my friends as to the fact that my ex made off with the horn spoons in our divorce. Aside from it being funny (horn spoons) — the bigger point was — spoons! mine!!

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