Monday, April 11, 2011

An Experiment

I had a rather interesting visit with my rheumatologist in March. I had two primary objectives.

1 - Get a referral for a CT Scan of my right shoulder (the one that is not replaced yet) so that at my 2 year appointment with my surgeon, the scan would be there and I could happily book the next surgery - soon. Mission: Accomplished.

2 - Talk about Humira and how it may/may not be working for me. Dr. K was not so supportive. He, essentially, was wondering pointing out that I am not flaring, so why change meds. How did I know how much Humira was working for me and how did I know that another drug would work for me? Good points, but no new TNF blocker. Mission: Not Accomplished.

Dr. K. did leave me with an experiment to try. His idea is that I won't really know how much Humira was working until I was off it. So he suggested that I go off of it and see how I felt, as it is fairly fast-acting and I could go right back on it. The idea is not to be off for too long, as it seems (according to research) that it is better for me to be on a given TNF blocker, rather than none at all.

Well, alright then. Let's give it a go. My last injection was March 13th. According to my bi-weekly schedule, I have missed 2 doses. I'm a little sore, but the world is not ending.

I think this comes down to my expectations. I expected to feel like a rock star on a new TNF blocker. I expected to feel normal. Or more normal. Or better. Instead, it was a hole lot of meh. Granted that is better than I am feeling now, but just by a few degrees, not the 90 or 180 I was looking for.

I think the answer here is two parts:

#1 - I need to adjust my expectations. I am still clinging to this vision of "normal". Well, it ain't likely happening. I've had RA for 20 years and normal disappeared somewhere a long time ago.

#2 - I'm going to keep up with my TNF blocker hiatus and see how things go. I'm pretty tough and pretty stubborn. I'd like to find out for myself if Humira was providing a strong impact. I think in the back of my mind, I still think there is a drug that will make a big difference for me. I need to keep up some kind of hope that there may be something out there for me.

Music has woven itself into the fabric of my life again, and there is a song from 2008 that I listened to quite a bit before my shoulder replacement, and it seems to have come back as the chorus resonates with me:

"That-that-that-that-that don't kill me, can only make me stronger"

Kanye had a good point there.


Anonymous said...

Ah yes, the good ole "expectation meter". I hate that bugger. Now on the doctor's comment about you NOT flaring. That is not for his interpertation solely. You can flare and not have drastic numbers to back you up. It sounds to me you have an Old School Doc?? maybe I'm reading it wrong. You are the best judge of your body and don't let anyone, ANYONE tell you different.

Glad I found you.
Gentle hugs.

Lauretta said...

Hi Megan! :)
Yeah I agree with Tammy's comment above. I'd like to add also that many doctors/rheumatologists have also done this to me graphs and statistics of how I'm doing, rather than just hear me for how I'm feeling. I don't understand's like they don't believe you unless they see the numbers. Sometimes I feel like showing them my scars (from ops) - that is the only solid proof I have for them, to say that I've been and still go through a lot of pain. I love how you find music therapeutic for you! Now that I think about it, I think I use music (my Ipod) a lot when I'm in pain.
I was wondering if you would be interested in having a piece of your work (a blog post perhaps) published in a zine? I'm doing it as a project for college and it's an attempt on my behalf to collaborate short stories from others who have RA/JRA. I hope to strengthen the community by developing this zine, but I need people to contribute, so that I have content to publish! :) If you are interested, please visit my blog and look under the post labelled "Attention all Arthritis bloggers..opportunity to have your words published in a zine."
Hope to hear from you soon and hope that you are feeling better soon too!!!
Lauretta :)