1) “Do you want your rubber duck?”
The favorite rubber duck has a squeaker which lets water in. Squeezing the water out of that duck brings severe hand pain. Not quite as much as the softer Thomas squeaker toys. (And water also hides in the duck so it has to be squeezed for two days.)
2) “I can do it myself.”
The worst RA example is not a jar. For me, it’s window blinds. I have those faux wood blinds that are heavy and hard to stack. Every single time I wrap that cord around my hand and pull, I tell myself not to ever do that again.
3) “I can be there at 9 a.m.”
Not if I don’t get up by 5 a.m., I can’t. Why do I think I can wash my hair and get dressed in only two hours? Even though I’ve lost about a third of my hair since March, it takes longer every time.
4) “Fine thanks, and you?”
Occasionally, I get a letter or comment saying “I feel bad for others who suffer more than I do with RA. I can still do so much.” I think: I know; me too.
Meanwhile someone else says, “Why is your website full of people who can still run and ride a bike? I feel like I’m the only one like me.” I know; me too.
Whether it’s because of sub-types of the Rheumatoid itself or our genetic differences, our experiences with the disease differ greatly, even in the same patient over time.
If we can be honest, this is how RA is. And we can and should fight our hardest to overcome, but still… it is what it is.
It’s extremely frustrating to hear others talk about what they can do, assuming we can do it too, whether they have RA or not.
It’s hard to explain all this, and I suspect most of us don’t try to.
One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance.
So, instead of saying what it is, I say “I’m fine thanks” and save a lot of trouble.
5) “Why does it hurt so much?”
When I stay on ibuprofen and Lortab long enough to make a difference in the pain, it never fails: I start think I’m not very sick. Any more. Until I miss a dose. Then I’m mad.
6) “Is this considered swollen?”
When I was off of the methotrexate for a while, I had more swelling. Now, I sometimes forget what my joints looked like before RA. Until I try to put on shoes or a watch. A ring would not even enter my mind.
Personal note: To make a long story short, my spine is a pain. I’ll try to clearly explain what I mean by that soon. If I seem to be absent, it’s because lately I’ve spent lots of time unable to sit or type. Staring at the ceiling is a special challenge, but today I need to push myself extra hard. Please send prayers and support as I drive away by 5 a.m. to take Roo for his hernia surgery. It should be a routine procedure and we’re praying it’s simple and easy.
Edit 12/29/11: Roo’s surgery was in August when this post was first published. It went very well and he’s doing great! Since I got new coupons this week, I updated the coupon below to the current offer.
NOTE: The NEW RA WARRIOR STORE IS HERE – Click here!!
One final thing: I received a coupon this week to share with you. You can use it on anything from the RA Warrior t-shirt store here.
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