Feeling Better

I'm feeling better! Mentally! I'm up to the full dose of my brain meds and I DID LAUNDRY last Friday and still feel good, so that means this is a definite change. Sigh. I think I have a crush on Trileptal. ♥blush♥

My psychiatrist told me Trileptal didn't get FDA approval for treatment of bipolar disorder but that there's a subgroup of us who respond to it. I seem to be one of those people. It makes me feel so lucid! It took a little while, but it kicked that mood out of my brain entirely. I'll probably still cycle up and down while on it, but I won't get nearly as bad as I was without it.

Going back on meds proves to me (yet again -- but yes, I still need the proof) that having bipolar disorder is like having Tourette's or a seizure disorder. It's involuntary. I can't control it -- or can't any more than someone with Tourette's, which isn't very much. They can try to suppress their tics for a while, but then they just have an outburst later. I can try to control my mood for a while, but it all builds up and breaks the floodgates eventually.

Why is that so hard to understand? Why do I still think I'm to blame for my disorder? Guilt, guilt, guilt, self-image, blahlbhalbha, etc.

It's surreal, the meds, because now -- all of a sudden, I understand how people can keep living! I understand why we aren't all lined up to take our turn jumping off the bridge! Wow, living is kinda easy when you're not hellishly depressed!

My psychiatrist also mentioned that "Reverse SAD" (Seasonal Affective Disorder) is an actual thing that researchers are starting to write about -- getting depressed in the summer, not the winter, or in my case getting moodier and ending each summer in a mind-melting mixed episode. Affirmation! I hate summer! It sucks! I'm going to winter in Alaska and summer in Chile with the penguins. F♥ck the sun.

My pain is the same. Eh, nothing new to say. I've got an appointment with a different urologist on November 5, a woman who also treats pelvic pain. I'm hoping for a good visit -- a holistic visit, taking into account all the stuff I experience. Someone who will listen and help me. We'll see.

My mom and I were just discussing whether these "hemorrhoids" I have aren't something else. I do have them (tasty conversation here), but they only poke themselves out once in a while and that area down there -- a little below my tailbone -- hurts intermittently whether they're in or out. Ah, the science of hemorrhoids. My mom and I were impersonating them.

So I'm wondering if I have some spinal problems and/or pudendal neuralgia going on. If I do, whatever. Right now, the butt pain is really not that bad. It hurts to sit square on my ass, sometimes, but I'm hardly ever in a situation that requires me to do that because I'm a waitress. And sometimes it really hurts to stand up from sitting. And sometimes it hurts to laugh, etc., but it's nowhere near as bad as the constant, torturous, singeing burning up front.

So I will mention it to the urologist, see a gastro, see if it's identifiable, and if not, see a spine guy. It would suck to have more mystery pain, and it would suck especially if it got worse and started collaborating in a serious way, but right now I'm so much more concerned with my coochie that this additional disturbance is no big deal.

Plus, if it is a nerve problem, it might be the cause of my other pain, which might lead to better treatment for it. I have yet to start the Neurontin as I'm enjoying this lucidity too much and don't want to drown my head in meds...♥blush♥ Trileptal...but I'm looking forward to seeing if it helps my pain at all.

Waiting

I told my psychiatrist about how my main roadblock right now is that I don't see a philosophical reason for living. He replied, "There probably isn't a philosophical reason for living. It has to be based on something else."

So the problem is actually that I don't have anything to base living on right now. I can't defend it philosophically and that was my last resort after health, social life, aspirations, spirit, etc., etc. fell away.

And after hope went ptttthbt, finally and disastrously.

What do you base life on after everything is depleted? I want to die so why don't I? When it's easier, I have an executive decision against it. When it's not so easy, inertia is my savior.

I have to be frank. These diseases make a lot of people want to die. They can and probably have been terminal. That is not okay and we need to be paying attention.

I wish I had advice on how to get through this but seconds are grating and I'm having a really hard time calming down. So I'm just trying to remind myself that even if each second hurts -- mentally, physically, or both -- it is still another second passed towards a time when I might feel better at least mentally, or towards a time when I can base my life on something again. In other words, I'm waiting.

Follow-ups

The MRI came back negative for problems in my urinary tract. I have a small fibroid but I don't even have to see my gynecologist about it. So I told the nurse who called me with the results that I really think I have interstitial cystitis and I'd like to be treated for it. I also mentioned that if I can get pain meds, I'd welcome them as the pain often makes it hard to do things like go to work in the morning or focus while there.

First I tried to make an appointment with another urologist to get a second opinion on IC, but the receptionist said I had to ask my doctor to release me before I could do that. LOL. So I thought first I'd try my urologist again because it might save me an appointment or at least an examination -- and I told the nurse that I'll seek a second opinion if he's not willing to go the IC route.

There are several meds for IC, but one main treatment for IC is diet. My good diet seems to be stricter than the IC diet (PDF) -- for instance, sugar is a horrible thing for my cooch. However, I am on a horrible diet right now because it's so hard to feed myself. I've even been eating gluten, which is good to do once in a while because when you don't have an anti-gluten diagnosis like Celiac you start thinking it's all in your head. But no, my body feels like it's 90 years old again and my intestines hate me.

My psychiatrist was great. When I started going into bipolar lingo, he didn't freak out that I knew about my condition (I love that). He also already knew about vulvodynia and interstitial cystitis and posited that they're both due to an inflammatory condition medicine has yet to define. He believed me when I said gluten gives me pain and again said medicine isn't there yet. So much better than my last psychiatrist who told me my gluten pains were due to a coincidental three-week flu ;)

The psych said Neurontin isn't so great alone as a mood stabilizer but that it enhances other mood stabilizers. So he put me back on Trileptal -- yay, my favorite! seriously! -- and gave me Neurontin on the side, plus a few Ativan for the MRI.

I started the Trileptal and I'll add the Neurontin in a few days. I'm looking forward to being back on meds -- Trileptal always made me feel more lucid, and I really need that right now. The weather's cloudy and so am I.

I am out of my crazy mixed episode finally. I can't believe a brain can do that to a person! But I'm still pretty depressed, and the issue is whether I have a future with pain. It's something I never really had to face while in the pleasant state of denial or the heat of anger. But now it's hitting home that the pain could be interminable, and I don't know what to do with that.

I just don't really see how a future with pain works.

But I have to try not to think beyond the present day. When I think about how I'd like to find someone and have children, have a sex life, do things other than tend to myself, not wrestle with pain every day, I start to panic. I don't see how those things are possible. And I want to write something uplifting about focusing only on today, but I can't right now. I am too scared and there's very little to reassure me.

I have more thoughts but they'll have to come later.

Sisyphus and Her Ball of Theories

I don't have syphilis! At my dermatologist follow-up, they checked for syphilis since my biopsy result (plasma cell vulvitis) sometimes comes along with syphilis and that test was missing from the initial round that got me the vulvodynia diagnosis. But I don't have it! And even more wonderfully, I don't have to tell everyone I know that I have syphilis!!!

They didn't check for Sisyphus, but I think that's because it's self-evident.

The appointment went okay. My dad went with me to be the heavy, and he wore a suit specifically because people react differently to suits. I thought it was very James Bond of him.

We talked for a long time with the resident, painting the picture of how the pain has devoured my life and there are no answers anywhere. And even though it didn't result in anything at all, it was really good to have an extended discussion about it with a more-or-less doctor. She pointed out that if my pain were due to an infection, it would probably have been killed off by immune system by now, or, if my immune system is compromised, it would've become systemic. It would have changed; if it stuck around, there would be additional symptoms, a fever, anything. I've thought about that before, and she's right -- or, probability is in her favor. That they still tested me for syphilis, that other doctors have treated me for infections -- an infection isn't impossible, but it shouldn't be the main theory.

The real doctor got the story from the resident and came in repeating "We have very few options." She gave me a sample of Vusion, a topical ointment of zinc oxide plus an antifungal. I tried Desitin (similar) when this thing started and it just made the area more irritated, so I haven't tried the Vusion yet. She also said that Protopic (tacrolimus cream) might help, but I explained that I really don't want to try another immunosuppressant without pain meds, and she wasn't about to prescribe those.

I kind of understand why she wouldn't give me pain meds when I remove the urgency of my situation and step into her cold, cold heart. She said I should go to pain management for that kind of treatment, and that's fine. She's scared of making an addict of me.

What I don't get is do these people really think I (anyone) won't go find some kind of pain relief by myself? The thing is, I WON'T. I'm a huge dork in that respect. But lots of people will, and I'd think it'd be better to get addicted legally, if nothing else.

About limited options, she's right to an extent. Plasma cell vulvitis is a rare diagnosis, and steroids are the first and most hopeful treatment for it. However, I've read about people getting surgery to cut out the painful skin, just like with vulvar vestibulitis, and I figure there are probably other things dermatology can do for me if I really think this is a dermatological problem. So the doc was being a little abrupt, but whatever. Used to it.

But she did mention something I've wondered about -- that the biopsy result could've been totally unrelated to my pain, or that normal skin could biopsy like mine did, with an abundance of plasma cells. And frankly, I don't think this is a dermatological problem. It hurts when I cough or laugh, it hurts to walk, my bladder can't get very full before I run squealing to the toilet, etc., etc. If there is a skin component, it's a lesser player than whatever is happening inside.

Then I realized that I could probably sue the urologist for continuing the cystoscopy after he saw I was in so much pain, and it dawned on me that maybe he isn't the best doctor to be treating me.

So I'm going to get a second opinion on interstitial cystitis. Even if I don't perfectly fit the description, those meds, unlike pain meds, are not addictive, and there's no reason I shouldn't get to try them. And then I can go back on a tender-to-my-pelvis diet and work on repairing my tubes and niches.

I'm reconvinced that I do have a problem definable as interstitial cystitis, and for some reason, that gives me hope. It reminds me of the gains I made with my diet changes last winter -- it reminds me of how the vulvar pain receded on that diet and how my bladder pain improved as well. It's a hard diet to keep, and it requires hope above everything else. Veggies, rice, meat. But I know if I can do it I'll feel better.

In the meantime, I am eating like the SADdest American possible in preparation for my MRI. I figure, if it's anything seeable, I might as well make the bulb glow :)

Not Shutting Up

Someone posted a nasty comment on the most recent post over at Life with Vulvodynia, accusing Quinn (and me) of being a pity-party blogger and of spreading negativity about our disease.

So, first, WHY would someone drop a comment like that on the blog of someone with SWINE FLU AND AN IMPENDING WEDDING?!?!? DO NOT LISTEN TO HER, QUINN!!!!!!!!!!

But more importantly...you know, I wrestle with this too. If you look back through my posts, you'll see that they have gotten a LOT more negative (and a lot less funny-attempting) over the past three months or so. I spent almost three years fighting vulvodynia with everything I had, seeing doctors, taking medications, taking supplements, changing my diet, etc., etc., etc. I can't speak for Quinn, but as far as I was concerned, I NEVER accepted my disease as permanent. EVERY TOMORROW I would wake up without it.

Denial? Maybe.

As I've lost my mind over the past month (with bipolar disorder as collaborator), I've been wondering where CRAZINESS fits in the stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

Yeah, I'm DEPRESSED.

I'm so depressed that I have never ever come close to this level of depression before in my whole bipolar life. I'm so depressed that I can't begin to tell you how depressed I am. To say that everything has lost meaning doesn't even touch it. I do not understand the point of human life anymore, and if I fell into an endless black pit right now I wouldn't see the difference.

If Quinn's (anonymous) commenter has a problem with that, so be it. Maybe she's not there yet. But this is how vulvodynia is for me, RIGHT NOW, and I have a right to tell the world how it is. I'm not spreading negativity; I'm not suckling negativity. Quinn and I can't tell tales of recovery because WE AREN'T THERE YET.

I expect that someday, I will climb out of this trauma mind and move on to a better state. I will accept my vulvodynia. I won't stop seeing doctors, and I won't stop looking for an answer. I DON'T believe vulvodynia is permanent. I believe, in fact, that it has a TANGIBLE source that someone someday will detect, even if not in me. But in order to detect it, WE NEED ATTENTION, and in order to get attention, we need people to know how very, very shitty this life can be.

Because otherwise vulvodynia is exactly what Quinn's commenter thinks our depression is: discomfort, to be dealt with by bucking up, a.k.a. shutting up.

Nuh uh, honey. I'm not shutting up. But I do hope that you, and all of us, find our answers, and if you ever need support you can write me.

P.S. Quinn's blog is the reason for this blog.

Happy Anniversary, Again

When I started this blog a little over a year ago, I didn't really expect that I'd be saying Happy Anniversary again.

On to Year 4! And I know I'm still relatively young in this vulvodynia/pelvic-pain thing. Many e-mailers and other bloggers have been at it three or four times as long, or for more than half their lives. Some "got" it while still in their teens (some *are* still in their teens) -- and one while she was just a kid. That is just baffling. It makes me angry beyond words, and I wish I were convinced that someone is paying attention.

Thanks for your comments and e-mails. Your support over the past few weeks really helped. I haven't felt too communicative and I'm coping by ignoring reality. But I will write back at some point, and I've been thinking of all of you.

Someone else trafficked a couple of Vicodin to me the other day. I took one while my pain was at a pretty normal level, and it seemed like it might've smoothed the edges of it a little. That was an improvement over the last time I tried it, during a moderate flare, when it didn't do anything. A friend said you need to take Vicodin regularly to get ahead of the pain, but my dad says that isn't the case for him. Who knows.

Anyway, I waited about an hour and a half, two hours and then took the second one. That took away a lot of the pain, though the central, most basic part of the pain was still there. But it was so nice to get a glimpse of not being in pain anymore. It was nice to sense that there are other non-vulva parts of my body down there, to remove the starburst of my pain so I could see the rest of me.

Then I conked out.

So many people have offered to bring me drugs, it's hilarious. Apparently I'm the only one who can't get them legally.

I scheduled the pelvic MRI for October 14, a short-tube!!!!!!! MRI my dad located. I follow up with the dermatologist on Tuesday and after my experience with the steroids, I'm going to refuse to do any more topical immunosuppressants without pain meds. Really, the fact that the steroids made my pain worse suggests to me that my immune system is doing something to FIGHT the pain. I THINK MY PAIN IS DUE TO AN INFECTION. It's Occam's Razor and it makes the most sense given how it started. It fits with the food triggers (pH changes down there could promote or suppress creepy crawly stuff, according to non-doctor me).

Maybe it's syphilis. MAYBE THAT'S WHY I'M CRAZY. Because, according to some, being in pain isn't a legitimate crazy-trigger.

And fine, if it's not an infection then just figure out what it is. Why doesn't anyone just figure out what it is! You can't tell me it's not figureoutable! Or if it's really not, then give me something to IMPROVE THE QUALITY OF MY LIFE. I DO NOT HAVE A LIFE RIGHT NOW. WHY DOESN'T ANYONE CARE. I'm seeing a psychiatrist on October 13 and I'm going to ask to try Neurontin -- it's a mood stabilizer as well as a common nerve-pain med. Then maybe we can try some tricyclic antidepressants, which can also act on pain. I don't think any of these will work because, one, Trileptal (same kind of med as Neurontin) didn't seem to do anything when I was on it, and two, I THINK MY PAIN IS DUE TO AN INFECTION. But anyway, at least we can try.

P.S. Sorry I keep throwing capitalized tantrums. I just feel so desperate. You know the Fates? They draw out the thread of life, and sometimes they draw it very thin.

P.P.S. Happy Anniversary.

Handy Wacks