Monday, January 5, 2015


It's been four or so weeks since the cryoablation of my right genitofemoral nerve and my pain remains the same.

So frustrated.

I've decided I'm not telling anyone about what's going on with my treatment anymore because when I do, I get constant questions about my progress, and it feels awful to tell people that nothing has happened.  Every question seems to topple the house of cards I'm trying to build.  And people don't realize or remember that every time I get a treatment, it takes a while for it to kick in.  Sometimes several weeks.  And when they ask right after the treatment if it worked, boom, down comes the house.

I appreciate the support, but it's taxing to keep other people updated all the time.  Every question makes me think about it, and I need to think less about it.  When I think about it, I feel trapped.  I feel damned.  I feel like I'm being punished.  And I need to avoid triggering those thoughts.

I've had glimpses of progress.  My left-side pain is still lower than the right side, but it's not gone.  The fact that my pain is no longer symmetrical is very good news, but I'm still in horrible pain all the time.  And while I've had moments or even segments of days when my pain has dropped low enough for me to think it's on the way out, they haven't lasted.

I just have to shove it to the back of my mind right now.  The late-winter months have been very hard for me the past few years.  In 2011, my pain was so bad that I had to leave my AmeriCorps position.  In 2012, I was on the way out with my ex.  In 2013, I was going to Rochester for the first batch of nerve blocks, none of which worked, and I was on a really bad brain med that caused my anxiety to skyrocket.  In 2014, I was on my second batch of nerve blocks at Rochester, resulting again in no progress, and my anxiety -- as a result of a failed nerve block that increased my pain -- grew and grew until it sidelined me entirely in late spring.  I can't go through that again.  I need to stay safe psychologically over the next couple months, which means removing my pain from discussion.

At the heart of feeling trapped by my pain is that I'm 34, I'm single, I want to date, I want to fall in love, I want kids.  And I don't know if it's in the cards.  It is really, really hard to surrender all that hope over to the universe.  But it feels like that's all my life has become.  Surrendered hope.

I get mad a lot.  I'm not sure how to be mad, so I snuff it.  I want to kickbox or something, but my pain says no.  I play my flute, but no piece is violent enough.  I listen to angry music and let my synesthesia slice my body apart.

I went to see Slayer at a friend's random invitation

and I thought it would be terrifying, but it actually felt really good.  I don't know what everyone else sees in it, but to me, that is music of surrender.

I don't know if I'll be updating my blog any time soon.  I've been working on centering my life after years of discrete whirlwinds.  My self-esteem is better than it's been in years.  I actually love myself again.  I need to live in that and not in the future.

1 comment:

  1. Thank you for sharing about the realities of pelvic pain and what it does to our lives. I don't share your same journey but I can certainly relate to feelings of hopelessness, especially after failed treatments. I'm almost 32 and divorced, which is worse than single because it came with a broken heart that still needs healing (not to mention an inability to trust anyone again). I don't know whether a marriage and kids are in the cards either. But I still have hope--for a fulfilling, joy-filled, and pain-free life. I pray that you can find a way back to your hope. Sometimes hope is all we have, and sometimes hope is all we need. I look forward to reading more blog posts, when it feels right for you to do so. Sometimes a hiatus is just what the doctor ordered. ;)