Tuesday, June 23, 2009

N=1 - Remicade hangover

Permission to speak freely?

I feel like $h!t. Excuse my French.

A week and a half ago I was running... chasing my wonderful 6-year-old son through the Redwoods in our favorite park. My daughter and I were having dance parties. Working in my garden was easy and irresistible.

And as of 48 hours ago, I can't move. I'm not scurrying. I'm back to creeping down the stairs. Every joint hurts, my hands are back to feeling like flippers, and worst of all, I have new finger joints involved.

I'm back to square 1. Maybe even square 0.

I'm assuming this is the Remicade wearing off. It sure feels like a hangover.

When you have a chronic illness, there is an interesting psychological tendency to believe you do not have that illness during symptom free periods. I frequently get trapped in that delusion. "Maybe I'm really better this time" I've recently been thinking, as I run and play and plant. "Maybe I don't need all these medications... maybe I just need love and seedlings".

My next Remicade infusion, which is Thursday, will be the true test. I hope it makes me feel better. But if it does, it will once again prove that I, indeed, have a chronic illness. I wish I didn't need these constant reminders. But needing to be reminded means I am feeling better. It's a terrible vicious circle...

Bring on the mousie.


  1. Hope you're feeling better Jenny. I ran across your blog while researching PA, which I was diagnosed with recently. Thanks for posting info on treatments. Wishing you all the best.

  2. I too think I'm over it, when actually it just means the medication's working.

    Like the post above, found your blog when looking for info on PsA. Nice to see someone else out there with similar problems...

    Clara x

  3. Thanks both of you! I'm sitting in the Remicade chair right now! Keep your fingers crossed, and thanks so much for reading!

  4. OMG!!! Thanks for saying this! I constantly think my Dr's must have something wrong, I need to hear from several dr's before I believe I have a new dx. I have PsA, bronchial asthma, chronic retinitis, and something else - they say perhaps lupus. I keep thinking I should lose 40lbs and eat better and maybe it will all go away. I've been on Enbrel 3 1/2 years.