Saturday, September 25, 2010

Vulvodynia Burnout

Last August, Wellsphere invited me to be a Top HealthBlogger. August was not a good time for me. Neither was September. Looking back through my e-mails, it took me until December, four months later, to sign on with Wellsphere and start having my blog syndicated over there.

They sent me a welcome e-mail that said if I put their Top HealthBlogger badge on my blog, my posts will get a boost in their search engines.

I added the Top HealthBlogger badge yesterday.

I think for the past year or so I've been suffering from vulvodynia burnout. People send me e-mails. I read them. I react to them. I don't reply. People leave me comments. I read them, react to them, don't reply.

For a long time my posts were dominated by images I thought were funny, double entendres and vulva doppelgangers. Over the past few weeks I've been trying to return to quality. After all, if my blog is being syndicated elsewhere, maybe I should reconsider posting another picture of mussels.

But the truth is -- and I'm responding to Tamra over at Living with Vulvar Vestibulitis, who admitted her own truth in her most recent blog post -- I am so, so exhausted by the thought of vulvodynia, and not writing about it is a way to make it exist less. I also stopped going to doctors, another way to forget about it. I even stopped caring about managing my pain through my diet. Over the past several months, my vulvodynia went from sometimes seeming like my life's sole constituent to being something I'm coping with passively and silently most of the time.

I think one of the most frustrating things about vulvodynia and a huge motivator in my new passivity is that there are never any answers. I ate some cranberries today, and my pain went up. Which I kinda expected because dried fruit in general worsens my pain. Why? Well, no one knows, and no doctor I've ever talked to has cared about helping me figure out why, so instead of obsessing over why it happens and why no one knows or cares, I'm just going to eat cranberries if I feel like it and avoid them if I don't.

(A recent commenter suggested I might have interstitial cystitis given that what I eat influences my pain levels. I saw a urologist last year who ruled that out. I agree that the food connection sounds like IC, but I simply don't have the urgency problem that is a central and essential characteristic of IC. I have referred to the IC diet in the past, however, and I feel like it has helped.)

Dealing with my vulvodynia in a passive way has been much easier on my spirit, at least in the short run. I'm not trying to do the work of an entire medical community anymore. I'm not noting my pain levels every second. I just go about my day, and, separately, I'm in pain.

I don't know how long being passive is going to work, though. Being passive involves a lot of looking the other way. For a split second I think, "OMG IT IS SO UNFAIR THAT I DON'T HAVE ANY MEDICINE TO COPE WITH THIS RIDICULOUS PAIN" -- and then I immediately switch to "Hum hum hum! Hi-ho! Hi-ho!" Sounds like a recipe for a Criminal Minds plot.

I think I have to find a balance between obsessing about vulvodynia to the point that it eclipses the rest of my life and ignoring it to the point that I might eventually go criminally insane. I also think I need to ask for help again. Finding doctors and making appointments is still a really emotional process for me. It's hard to be optimistic that they'll take me seriously, let alone that they'll be able to help.

So that's my truth. That's why I haven't responded if you've written -- I'm reading whatever you send me, and I am with you in spirit, but writing back is beyond me right now. I've been holding my pain at a distance, making it less personal as a way to deal with life in general. I know someday I'll have the energy, confidence, drive, interest, strength to be a full-fledged community member again.

1 comment:

  1. Hi just read about this treatment !
    Good luck ;)