Thursday, February 10, 2011

My Urethra is an Evil Flower

I haven't posted here in two months, and it's because a lot of things have happened in my life that I didn't know how to share here on the blog. Historically, I've shared pretty much everything going on in my life here, or everything that relates to vulvodynia plus some. But life hit me pretty hard over the past two months and even when I thought I might want to write a blog post, I didn't know how to start.

Today I'm home from work again, just like in my last post, unable to sit and having trouble walking or moving. Two days ago I had a sudden onset of increased urination pain along with blood in my urine. I thought I might have a urinary tract infection, but my UTIs usually come with some kind of additional signal and never hit out of the blue. I hadn't had sex in several days and even though I'd had a post-sex flare, Neurontin had pretty much taken care of it.

Yesterday I stayed home because I had a lot more blood in my urine, and I went to urgent care. The urine dipstick showed that my urine had lots of blood and leukocytes but no nitrites or bacteria. So no exact evidence of infection, but the blood still indicated I might have a UTI.

The doc gave me some antibiotics, and I filled the prescription but I haven't taken them yet. This happened back in September too, a horrible flare with blood in the urine. My home test then showed leukocytes but no nitrites (nitrites point towards bacterial activity), and when I went to Planned Parenthood, the doc said she thought I probably didn't have a UTI despite the blood. And voila, without antibiotics, the pain and the blood ceased in a few days.

So this time I'm going to wait and see what happens. Antibiotics can make me flare even worse, and I am, frankly, terrified of that kind of pain.

Two months ago, shortly after the horrible flare I wrote about in my last blog post, Catfish and I had a gigantic fight, the apparent precipitant of which was my pain. I was flaring and spending a lot of time on the toilet. I wanted support. He was rolling away from me in bed. I told him I wanted support, he told me he didn't know what to do, I told him all he had to do was hug me, and from there things exploded. I was moving into his place at the time, but the next day I was sleeping on my parents' extra bed, where I stayed for a month and a half.

I want to emphasize -- though there were other factors in the tension between Catfish and me, like how moving in with someone is scary -- that that last fight was all about my pain and his lack of support. I want to emphasize this because I want the world to know and care that chronic pain screws with people's relationships and lives.

We -- Catfish and I -- are actually still together. Sometimes I think it's ridiculous. Sometimes I think it's right. I have a thousand different thoughts a day about it. He can be so supportive, but sometimes he sucks, and when he's not supportive in a crucial moment it makes me feel even more like trash. There's a learning curve with supporting someone who has a chronic illness, but I can't tell whether he's willing to climb it.

Right now I'm trying not to think about him much. I see him, and honestly, it's wonderful. We're talking openly about our problems and grown-up stuff like that. But when we're apart -- which is a lot right now -- my mind starts to try to resolve everything, to make a decision about whether Catfish and I should stay together indefinitely, and figuring that out is impossible right now. So I'm practicing shutting down my brain and leaving all the figuring to time. Eventually things will be clearer and I'll trim those thousand thoughts a day down to a few.

My anxiety flared tremendously over the past two months...I can't even begin to describe it. I added Effexor back to my meds but I'm taking like 25mg a day or less (I open the capsules and take a small amount) which is working really well. When I was on 150mg last winter I slept the whole time. If I have side effects from the Effexor at this dose -- constipation, fatigue -- I don't see them and/or they're perfectly manageable.

I also have Ativan, an anti-anxiety med, because I've been having panic attacks out the wazoo...

This morning when I woke up, my pain was low. Then as I peed and moved around, it crept up. By the time I got to work, I couldn't sit down. I was also having urgency. I left about an hour after I got there.

I've learned how to drive my car without touching my butt to the seat -- I push my foot into the floor beside the clutch and brace my right hand on the parking break. It's amazing how not touching my butt to the seat lessens my pain.

The Neurontin has helped. I took some when I got to work -- despite not really walking straight this morning after taking two in the middle of the night when I awoke with a flare -- but it didn't kick in fast enough. But it does seem to help. Whereas in December I had a two-week-long flare, the Neurontin has been keeping my flares to a few days.

The current flare is a weirdo. I don't know what's going on. I figure blood is another symptom and not part of a UTI, but I'm no doctor...

I've decided to see a specialist in Rochester. They sent me a survey in December, and I filled it out but I never sent it in because I wanted to write an extra note with it (you know, in case they'll read it...) but I was overwhelmed with the rest of my life. Now I've seen a few new things, so I'm going to amend the survey as well..

As far as my service with AmeriCorps goes, oh my LORD I want to quit. I feel like a complete idiot missing work for my crotch -- or my anxiety. Complete asshole idiot. My supervisor is incredibly understanding but it doesn't make me feel any better about it. My mom reminded me yesterday that I would be having these problems no matter what job I had, so I should stick with it. But it's hard to keep going in when I feel like a fool.

I'm running low on mental energy. I'm so stressed right now. I feel like my hair is turning gray. I keep searching for gray hairs, and I'll spot one, and I'll pull it down, and it's totally not gray. But I did find a black hair among all the brown. That made my day, seriously.

I'm trying to relax -- I found some free relaxation podcasts on iTunes and I put them on...I think it helps? I try to meditate, which I am awful at, as any beginner is -- "I'm breathing too slowly to focus on my breathing! There's all this empty space between breaths! How can I focus on my breathing when I'm not breathing?!" I'm eating better, which is making my skin break out and adding to my feelings of awesomeness (I always break out for a bit when I start eating better...positive reinforcement!). I'm trying to compartmentalize, but it's hard when your crotch goes wherever you go, occupies every compartment.

I need a sabbatical.

I think the biggest stress right now is how my life is interfering with my AmeriCorps service. It's hard to take pride in yourself, even just who you are, when illness keeps you from fulfilling your obligations. I'm not behind on my AmeriCorps hours, and I'm going to switch over to work stuff after I post this...but it doesn't matter. I'm so erratic right now, I never know what'll happen tomorrow, how I'll feel, if I'll be able to sit or walk...if I didn't care so much about what people think of me and just did what I have to do for myself knowing that I am doing the best I can in all areas of my life, I wouldn't be this stressed out. How do I start doing that?

So that's my life right now. I'm sorry I was away for so long.


  1. I can totally feel your pain. It just becomes exhausting. Trying to work a full time job AND go to doctors AND do PT AND deal with throbbing, burning pain. It's just too much sometimes. I wish our employers could offer some kind of "I need a break" time off.

  2. If you're going to the Chronic Pelvic Pain specialist I think you are, then you can be assured that he does in fact read the questionnaire, throughly.

    I also have idiopathic hematuria along with PN and I had a retrograde cystography to make sure nothing was going on urology wise.

    Hang in. I know it's hard, but life won't always be this hard.


  3. I am so sorry that it sucks right now. Thank you for writing about it. It helps more than you know. Especially the relationship part. Hang in there. It will change, it has to.