Truth and fear

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Two things that have been on my mind lately…

Truth.

A large part of the reason I haven’t been consistently blogging for awhile is because I am clinically stable. I have been for awhile. Everyone, please knock on wood.

Because of that, I feel like I don’t have as much to offer right now. That my stable experiences are somehow not relevant to the conversation.

If you feel that way about hearing from patients who are stable, I’m not upset about it. I understand. When you are reading and trying to find bloggers you can relate to when you’re in the midst of a flare, my current health status doesn’t add to that dialogue. Jump back to posts from 2010, there is a lot of health drama in that timeframe.

I share this as a way of explaining a big part of why I’ve been absent for awhile. I honestly don’t know what to think of feeling like I don’t have much to offer right now. Part of me says that’s bullshit, another part of says it’s ok to sit back and marinate on that for awhile.

What I can offer is thoughts on what it’s like to be stable.

Grateful. Happy. More carefree.

But also.

FEAR.

Like scared shitless sometimes. Realizing you’re that idiot who walks a wire across the Grand Canyon with no safety apparatus. Knowing that you won’t see the gust of wind coming until you are plummeting.

I have been on my current medicine regimen for 3.5 years. Diclofenac and xeljanz. That is the longest I’ve ever been successful on anything.

Humira was great. Until it wasn’t. Roughly 2 years.

Enbrel didn’t do a damn thing.

Orencia was great 2.5-3 years. Until it wasn’t.

And when it wasn’t, it was like being hit by a freight train out of nowhere. And it is devastating.

I realize that I’m lucky, that even if xeljanz fails me, I haven’t failed that many medications and I have options.

But I don’t want to have to go through that again.

So I carry on with life, enjoying feeling stable, but the fear is always present.

You never really feel normal again, even if you’re feeling better.

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6 responses »

  1. Last time mine gave out, i was using a wheel chair in the grocery store. I could barley move. Rituxan pulled me out and has been going now for 4 years. Thank goodness. This is number 6 for me so I definitely get it. Still you know we get this day only once. Worry or live? For me it is live. Tomorrow I might not be able to do otherwise.

  2. For now you’ve got the golden ticket. Enjoy! I agree that, even in remission, the fear is always lurking. RA certainly does change what “normal” means. I hope your meds continue to work for a very long time 🤞

  3. You’ve beautifully summed up how I feel most of the time (in between occasional flairs, and why I don’t blog very often either!) Glad things are going well for you and long may they continue to do so!

  4. I totally understand. I’ve had periods of flare but for the most part do very well so I don’t feel that I have much to add to the conversation. Like Rick said, I’m trying to live rather than worry about the next medicine fail. Because I’ve managed thru my med changes in the past. Remicade, humira, Enbrel, Xeljanz and Xeljanz XR. When this fails, I will move on.

  5. Wow, your words describe how I feel when my RA is better controlled. I don’t talk RA, don’t think about RA, and certainly don’t read about it. I feel zero guilt about it. We suffer so much on a typical day and the disease controls us so much that we have earned the right to ignore the disease while we can. We go to bed being appreciative of what our bodies can do, because we have no idea what tomorrow will bring. Also, after being on Enbrel for fifteen years, I just recently switched to Xeljanz. It brings me so much hope after seeing you doing well on it. Do you mind telling me how long out took before you stated to notice an improvement?

    • Hi Amy, I noticed small differences on xeljanz within a week. I want to say it was fully effective after 6 weeks to 2 months? I hope you have the same results!!

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