tag:blogger.com,1999:blog-22403559022107867342024-03-14T11:26:07.199-07:00Mad Peachliving with chronic pain in the hoo-haEstherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.comBlogger298125tag:blogger.com,1999:blog-2240355902210786734.post-33948060203885111052019-02-06T21:08:00.000-08:002019-02-06T21:08:47.705-08:00Well I'm a dumbass and it finally caught up with me: How not eating gives you anemiaWhen you have a medical condition that can become a disaster if you eat the wrong thing, you kind of stop wanting to eat. Like, I could eat this unassuming bowl of soup and possibly set my pelvis on fire, or I could postpone eating until it's no longer relevant and lock my current pain level in for the foreseeable future.<br />
<br />
I've tried the latter, and it seems the point of irrelevancy as far as eating goes is death, not some robot-body swap-out or conversion of melanin to chlorophyll. I'm petitioning the gods.<br />
<br />
In any case, when I found myself anemic in summer 2017, my gynecologist said that iron pills weren't necessary. They cause constipation, which can be a terror on the pelvis, and my iron level would adjust naturally.<br />
<br />
Ha! Hahahahahaha. More than a year later, I found that every time I stood up, I'd close my eyes and fall asleep for half a second. Lovely dreams, teetering there next to my desk, snuggling papers meant for the copier. I'd had med changes, but if you've been through this stuff, you know the difference between new-med tired and other tireds. New meds make me drowsy. Anemia makes my pulse race when I vacuum.<br />
<br />
So that year over which my doctor said I should've been reacquiring iron was a year over which I ended up not reacquiring iron, and I did not reacquire iron because I hate eating. Over calendar year 2018, I followed the 80/20 eating rule: 80% of the time I avoided eating, and 20% of the time I ate food from the gas station.<br />
<br />
Gas stations have crap food, but some crap food is kind to my pelvic pain: potato chips, popcorn, Natural Cheetos. All naturally lacking iron.<br />
<br />
I really did not consider the fact that my diet might not actually be providing me with all the nutrients I need. Isn't that insane? I worried about calories because I didn't want to dip below my weight minimum. If I felt like I hadn't been eating enough, I'd eat the simplest possible thing: a vanilla milkshake. At only 800 calories, they can also soothe bladders! So between gas stations and the ice cream shop, I kept my BMI in the normal range. But as I was already in a spot with the anemia, I didn't have the stores in my body to weather my narrowed diet.<br />
<br />
Alas, the forces of my many ills have combined and thrust me upon the shore! Of taking iron pills and trying to eat more meat. I've also returned to the spinach-and-two-bananas smoothie, which I really missed making. Remember <a href="http://madpeach.blogspot.com/2009/02/q-tip-test-and-theory.html">the good old days when I actually tried to fix my pain</a>? When I actually believed I could do it? When I had an ever-expanding spreadsheet charting every damn thing I did in a day to see if I could spot what the pain demon was feasting on??<br />
<br />
I BELIEVED back then. I HAVE NOT BELIEVED in a very long time. In fact, I think I entered a relationship after my spreadsheets failed me just to avoid any more trying. Spreadsheets cannot fail us, people. It is we who fail the spreadsheets. ("We" is the correct pronoun here. The "to be" verb does not take an objective pronoun. I am not citing any sources and I am relying on a mental note made seven hundred years ago. If I'm wrong, it was the iron.)<br />
<br />
(I could stay in parentheticals forever, couldn't I? I could keep posting to this blog in parentheticals and never have to make the next logical statement in the progression of this blog post. Question: would my post titles have to be parenthesized as well? Question: do you also feel like you're underwater in your underwear when you're reading parentheticals? Question: do you read parentheticals?)<br />
<br />
Look, it doesn't matter when I last believed. What matters is I know a lot about my pain, about where it comes from and what drives it and what alleviates it, and those things don't require some airy faith to uphold. They are facts. What I need instead is to be able to live inside the constraints of the facts. Because that is a strict little space in there, and we all have a limited amount of self-discipline. I have to figure out how to build mine up again so I can observe the laws of my pain while living the rest of my life and without eating my meals at the gas station.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-71351616458121358562018-10-16T21:56:00.000-07:002018-10-16T22:04:21.345-07:00My pelvic pain is basically an allergyThis is the post I should've written immediately but didn't because, probably, I tweeted about it instead, which is very useful for the zero people who follow me on Twitter for pelvic-pain updates.<br />
<br />
Sometime earlier this year, I had a meltdown at my urogynecologist's office. It was the kind where you see that your pain is eternal and that you're trapped inside it forever and it crushes you and you get so angry you actually start gesturing in your doctor's presence, like you're a human with a person inside you.<br />
<br />
After some gesturing, I spat out, "I don't understand why we don't know what's going on!"<br />
<br />
"We do know what's going on," my doctor said.<br />
<br />
Whaaaaa???????? What was that, senor? We who? Who knows?<br />
<br />
"It's an allergic process," he might've said after I did my voiceless, expressionless double-take. He explained that basically, my bladder is recognizing a lot of things as allergens, and that in response it produces mast cells and yadda yadda yadda, I think he did actually explain this to me but I'm not up to doing the research to corroborate my memory tonight.<br />
<br />
"Orange juice?" I said in a sentence that I can't remember.<br />
<br />
"When it hits your bloodstream, your body reacts," he said but in different words.<br />
<br />
"That's why the bladder flares up within minutes of drinking orange juice and not after it has filtered through the blood and into the urine, making the urine more acidic," one or both of us said in part or in whole.<br />
<br />
And that's why antihistamines help my pain. Did I even post about that??? I take Zyrtec for seasonal allergies -- it's the only non-Benadryl one that has an effect on my itchy eyes. I noticed that when I took Zyrtec, I'd have lower pain, so the doc said go ahead, take it every day. Then he put me on hydroxyzine too, which is one of the standard medications used to treat interstitial cystitis. Zyrtec, it turns out, is a metabolite of hydroxyzine. A little bit of serendipity there.<br />
<br />
I repeat: hydroxyzine, an antihistamine, is a standard treatment for interstitial cystitis. I have known about this for longer than I can estimate, but I never had the puzzle piece of an antihistamine's efficacy in treating IC. Now I have it! And you do, too.<br />
<br />
Over the summer, I was on 10,000 medications, okay that isn't true. But I was on nortriptyline, a tricyclic antidepressant. My psychiatrist prescribed it for depression, which it didn't help, but I stayed on it long enough to confirm that it didn't help my pain either. That's the second tricyclic I've been on and I think we can cross those off the list for my pain treatment. Also! Word to the pain-havers! Nortriptyline made it even harder for me to pee, and it backed up my bowels too. Those were pretty rotten symptoms on top of pain and pelvic-floor problems.<br />
<br />
Meanwhile, the urogynecologist had me on Elmiron, the big-name IC drug, three times a day, as well as Zyrtec once a day, hydroxyzine three times a day, and he wanted me to go back on gabapentin and take it three times a day and I got the script filled and took one and said to hell with that. That drug takes a lot of adjustment and I know a dose of 300mg three times a day isn't high enough to help (see the years 2010 and 2011).<br />
<br />
Along with my other meds, this was just, I just, I just felt disgusting. I'd fill my little pill holders and take pictures of them because they looked so ridiculous. I think I was up to 8 prescriptions plus the Zyrtec, and then throw some vitamins in there. I knew that some or all of those meds could change my life radically, but I also started to feel like I was pill chasing.<br />
<br />
And between the nortriptyline and the antihistamines, I felt like a little fading fairy in a Disney film. I was sedated and lightheaded all day long. My mouth and eyes were dry and I would panic easily from feeling lightheaded and thinking I was going to faint and die.<br />
<br />
At the same time, as spring turned, the antihistamines seemed less effective. It seemed like since they had more to overcome because of my seasonal allergies, my bladder wasn't getting the same benefit. I thought back and remembered multiple out-of-the-blue pain flares in April. I also remembered that I seemed to have better success with Elmiron in the winter. At least one study has shown that people often experience more IC flares during allergy season. No I'm not finding it right now.<br />
<br />
So here I am. I take hydroxyzine in response to a flare rather than preventatively. I ran out of Zyrtec or put it away in a strange place so I haven't taken it in a month or so. I'm off Elmiron entirely, mainly because my inconsistent experience with it started to wear on me -- though now I realize that the inconsistency might've been seasonal.<br />
<br />
Basically, I've put a moratorium on chasing medical treatments. I decided if I'm going to do this, I'm going to do it the way I've always thought it should go -- and now I know why it could work!!!!!! I've got to eat well consistently for at least a year. I've got to avoid the bad foods as much as possible. My top triggers seem to be<br />
<ul>
<li>vinegar</li>
<li>alcohol</li>
<li>caffeinated tea</li>
<li>spicy food</li>
<li>tomato-based things</li>
<li>chocolate</li>
<li>citrus</li>
<li>coffee</li>
<li>sugar in certain forms (like, SweeTarts. Other forms can be bad, but that kind is worst)</li>
</ul>
There are other foods that bother me, but these are the foods that are like bombs. Vinegar, for example, it's like, let me just shove a squid up my urethra instead. Caffeinated tea is a gamble. Sometimes it's fine and sometimes it's like someone is trying to launch a zeppelin in my bladder. Spicy food and tomatoes, I wake up the next morning refusing to move because the pain is so bad and will just get worse.<br />
<br />
Cutting these out is not hard nutritionally. Almost all of them do not provide us with nutrients. And I'm not too overly tempted by any of them not to be able to cut them out with a couple weeks of refusal-by-willpower.<br />
<br />
After that it gets more complicated. If I really want to do my bladder right, I need to eat very simple whole foods and limit those foods until I can figure out the intermediate pain triggers. I'm fine with a diet of eggs, chicken, rice, potatoes, kind vegetables, oatmeal, and bananas, but there are three problems I run into:<br />
<ol>
<li>It's very easy to eat too little on this diet.</li>
<li>Where are the snacks?!?!?!?!?!?!?!?!?!?</li>
<li>Other people and the social obligation to eat with them.</li>
</ol>
<div>
#1, okay, eat more. #2 is very hard. When I haven't prepared my lunch for work, I am very, very likely to go off the diet and eat whatever is handy. #3 I've dealt with before, but it takes a spine.</div>
<div>
<br /></div>
<div>
So I decided not to make this a cold-turkey thing. I decided to work on cooking more, and as that habit falls into place, I won't have reason as often to go off the diet. It's working pretty well so far, actually. I think taking the pressure off by not aiming for perfection helps me stick to the deal. And when I eat with friends or family, I don't feel like I'm cheating -- I've blocked out space for it in the plan. Eventually I can go back to the good old days of sitting in a restaurant watching everyone else eat. But I won't attempt that right now while my self-discipline is still meager.</div>
<div>
<br /></div>
<div>
That's my long-overdue news that I'm pretty sure I didn't post about yet. It was a breakthrough for me in understanding the way my pain works and what I have to do to fight it. It helped me start believing again that I can get better, that I have enough power over my situation to direct the course of my illness. </div>
Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-65184871830066773782018-10-04T17:48:00.002-07:002019-10-02T21:59:39.676-07:0012 YearsOctober 2 was the twelve-year anniversary of my pelvic pain's arrival.<br />
<br />
The pain actually began gradually. In August and September of 2006, I started to get very low-level pain in my lower abdomen that I attributed to not drinking enough water. It was constant but very quiet, like a minor headache, and I hardly noticed it.<br />
<br />
Then, on Friday, September 29, I met someone new and hooked up with him. The next morning, I regretted not peeing after sex, as we are advised, but thought the discomfort was fleeting. It didn't feel like a UTI exactly, and I again had the vague sense that if I drank more water, the pain would subside. By Monday, however, the pain was full blown, and my new life had begun.<br />
<br />
My pain in those early months was not constant in the way it would grow to be. It cycled up and down. When I peed, it would catapult up the scale and ring on afterwards for a half-hour or so. Then it would quiet back down. It also seemed to cycle relative to eating and other activities, though I didn't spot a pattern.<br />
<br />
Frankly, I wasn't looking for a pattern in the first couple months. I thought I had an atypical bladder infection that would resolve with the right antibiotic.<br />
<br />
The first doctor diagnosed me with a UTI and gave me antibiotics for that. The second doctor diagnosed me with chlamydia and gave me antibiotics for that. Both diagnoses were wrong and I ended up getting an ultrasound of my bladder and kidneys to make sure I was eliminating all urine when I peed. I was. The next doctor tried me on a month of Macrobid, which didn't work either.<br />
<br />
As the months passed, the intermittent stretches of low pain went away. My muscles were kicking in, trying to hold my pelvis steady because movement made the pain worse, and eventually that muscle engagement became dysfunctional.<br />
<br />
I went through countless gynecologists and midwives, a few of whom were incredibly condescending. It was a horrible stretch of time. Finally, eight or nine months after the start of the pain, my mother's gynecologist diagnosed me with vulvodynia.<br />
<br />
It's hard for me to write past this point because I get so angry.<br />
<br />
Right when my pain flared up, I saw about five urologists who could've diagnosed me with interstitial cystitis. IC is not common, but it's not obscure. It's well within a urologist's wheelhouse, and any sustained pain resembling a UTI should be investigated as possible IC.<br />
<br />
I saw six or more gynecologists and midwives who could've diagnosed me with vulvodynia. Vulvodynia can affect up to 15% of women at some point in their lives, depending on which statistics you're looking at. It should be one of the first things doctors consider when women have unexplained pelvic pain, yet I was told to change my toilet paper, bathe in oatmeal, and use Aveeno.<br />
<br />
If a urologist had caught the IC, I might not have developed vulvodynia. My pain might've remained cyclical and not become constant. My pain might've receded to a low level with intermittent spikes. Note how I'm not saying we could've cured it. It's possible, but I don't like to think that far.<br />
<br />
Early on, I was able to have sex without pain so long as my bladder wasn't in the mix. Pain-free sex was gone by the time I started visiting gynecologists.<br />
<br />
If a gynecologist had caught the vulvodynia at the start, we could've fought it before it acquired more and more layers to the point of becoming indistinguishable from the bladder pain -- to being worse than the bladder pain.<br />
<br />
It could've saved me so much had any of these doctors taken me seriously. Had they looked at me as chronic and not acute.<br />
<br />
No use looking at what's lost, but all the same, I have a really hard time being high-minded about it. Maybe it's because my loss isn't just past tense. The pain stands between me and my senses, between me and my thoughts, me and my hopes, me and experience every second. I still do not hear music like I used to. The smear of my pain is always there dulling it. The world is constantly muted.<br />
<br />
The past week has been terribly difficult and I don't know why. My anxiety is intractable. It's wires down my skin. I've tried to zero it out in multiple ways, but so far nothing is helping. I've also been exhausted, again in a different way than normal. I rotate through possible causes in my mind -- season, weather, food, work, pain -- but there's no history for any of the current variables producing this kind of anxiety and fatigue.<br />
<br />
When I'm less tired and less overwhelmed emotionally, I'll try to post about my diet experiments and some progress I've made in understanding the mechanism behind my pain.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-42270269072283586492018-03-10T09:55:00.000-08:002018-03-10T09:55:09.267-08:00Medication interactionsApparently estrogen can decrease the amount of lamotrigine in the bloodstream. Lamotrigine is the linchpin of my bipolar treatment. Lithium does this happy little dance to clear away the clouds, and diazepam runs to the rescue when my anxiety gets bad. But without lamotrigine, everything collapses.<br />
<br />
So, goodbye birth control.<br />
<br />
I started it up again about six weeks ago and have felt increasingly worse. At first, I thought it was normal aberration, maybe seasonal. But the past week, the bipolar cycling has become obvious. The only times I've cycled like this while on my current med combo are under extreme stress. The cycling doesn't start up because it's February, and it doesn't start up because I am worried about a medical procedure.<br />
<br />
I called the psychiatrist on call today to confirm that the birth control could be the problem. Why my gynecologist didn't bring it up, I have no idea. Maybe it isn't on his radar. Maybe they are more worried about which medications can interfere with birth control and cause babies instead of what birth control can do to people who are on medications for bipolar disorder or epilepsy.<br />
<br />
I really hate everything right now, especially myself, and I'm trying to remember that this is a mental state, not the truth. Just get through today, get through the next few days, and the lamotrigine will be at the proper level soon. If I'm not too far down the path of bipolar episode, I should come out of this without having to change my medications further.<br />
<br />
Thankfully, I was just on birth control for birth control, and there are options that don't involve estrogen.<br />
<br />
Pelvic pain data: the birth control I was taking (levonorgestrel and ethinyl estradiol... no brand name provided on this packaging, though there are many) didn't cause me more pain, but it did cause me to pee more. That was my experience when I was on it before, too. That time, I didn't note changes in my mood, but it's also possible I was in a rocky place at that point and wouldn't have been able to note changes anyway.<br />
<br />
So, of course, when I started Vesicare, intended to treat urinary urgency and frequency, at the same time I started birth control... that was poor science.<br />
<br />
Now to figure out how to be okay with the minutes I am in.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-39933468578541973922017-10-15T02:16:00.000-07:002017-10-15T02:16:40.532-07:00NightmareI had to go off Elmiron over the summer for other medical reasons. I started it back up again several weeks ago and haven't seen the benefit like I did before. Maybe it hasn't kicked in yet.<br />
<br />
I'm in a relationship and on birth control. Birth control has been linked to pelvic pain, but usually to its onset, not its worsening mid-condition. Still, I don't trust it.<br />
<br />
My pain isn't really worse -- it just hasn't gotten better with Elmiron like it did last spring. I blame myself for not taking it regularly enough, and surely I was not taking it exactly as prescribed while I was working all kinds of hours during the Indians' baseball season. But I doubt I've been taking it any more inexactly than in the spring.<br />
<br />
Here's the thing. I'm up in the predawn hours because I got up to go to the bathroom and peeing felt like being ripped in half. Which is normal. And I lay in bed waiting for the pain to subside, but I didn't doze off again like I usually would. Instead my feelings got hurt.<br />
<br />
Penelope Trunk wrote in a recent blog post, "When you are living a nightmare you can't process. You are just surviving." When I read that, I wondered if my life counts as a nightmare. She was talking about childhood abuse. This is not that.<br />
<br />
But tonight I thought of how when my pain is distressing, my mind jumps to rigging my neck to something and kicking over the chair. Then I thought, well, that's probably a thought habit. That's not a nightmare.<br />
<br />
I have a thought habit I prefer for its impossibility. The earth falls away before my feet. I can step off without waiting, without preparing. Preferably I'd replace the other habit with this one, but they pop up in different circumstances. When I'm sitting still waiting out pain, it's my neck. When I'm moving around walking through pain, it's the cliff.<br />
<br />
I haven't killed myself yet so I figure I probably won't. But I couldn't hold judgment against anyone who did, and people do.<br />
<br />
I think I'm too much of a coward to kill myself. But when you cross from this space to the other one, fear is a different thing.<br />
<br />
Last fall I crossed to that other space, and I stayed with my parents and attended therapy five days a week for two months. I put myself in a safe space. I'm still here.<br />
<br />
Here at five in the morning, I see the reasons for living. I am not in constant emotional torture. People at my current job speak of me as a Pollyanna. Maybe that is relative. It's certainly learned. I hope it's true and not compensatory.<br />
<br />
I would just like some progress. Some degree. If urination could not feel destructive. If I could forget about my pain for stretches of the day.<br />
<br />
Why am I a miserable character? This pain has hurt so many people in my life. The thought of my grandmas worrying about me. I will likely see the sunrise today.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com3tag:blogger.com,1999:blog-2240355902210786734.post-23788250499634540512017-05-23T16:31:00.000-07:002017-05-23T16:31:23.415-07:00Elmiron is working and I've become a crybabyI'm back on Elmiron, the only med approved by the FDA to treat interstitial cystitis. I'm one of the lucky people who sees an effect on my pain from Elmiron very early. Within two weeks, my pain is lower. Sometimes it takes people months to see a difference.<br />
<br />
My pain often gets very low on Elmiron. When I eat something bad, my pain shoots up, so I have greater incentive to eat well -- instead of feeling bad all the time, I now feel bad only after eating something that triggers my pain.<br />
<br />
Which has made me into a crybaby. When my pain goes up to what was before an ever-constant level 5 or more, I CAN'T BELIEVE HOW MUCH PAIN I'M IN! How can anyone live this way???? This is ridiculous!!! How am I supposed to move? I need to stop. This is an emergency. I have to lie down. I need ice. I need painkillers. Etc.<br />
<br />
Which in turn gives me respect for the living I've done with this pain for more than ten years. I got used to the pain being bad to the point where I didn't realize how bad it was. It was bad!!!! Wow!!!!!!!!!!!!!!!!!<br />
<br />
That's all.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-19551401258081506322016-11-05T22:46:00.000-07:002016-11-05T22:46:26.428-07:00How I got confirmation of, if it makes sense, PTSDIn September this year I got extremely depressed. I started staying with my parents because I didn't feel safe alone. I expected the depression to lift in a few days but it didn't. Then a few weeks, but no. So my therapist and I agreed I should do an intensive outpatient therapy program, group therapy for three hours Monday through Friday. I've been doing that for a little over three weeks now.<br />
<br />
I feel better. I'm on a new med and I'm on higher doses of my old meds. I've worked through a lot in therapy. It's the kind of stuff any person could use but that you don't realize is missing until all your usual tools for getting through life are gone. It's like we're all carrying around our lives in boxes, keeping everything together, and then you get depressed and those boxes disappear. And you realize how disordered and imbalanced and incompetent we all are. And you can't swap in new boxes because depression won't let you, so you have to figure out how to organize yourself and your life in a way that you can carry it all without a box. If that makes sense. That's the best I've got so far in explaining the intensive outpatient program.<br />
<br />
My therapist thought some of my anxiety might be due to epilepsy or migraines because some of it seems neurological, not psychological -- feeling like I'm lying down when I'm not, for example. There were times when I literally felt like I didn't have a head. But my psychiatrist and the psychiatrist who oversees IOP agree that these moments, which include moments of extreme terror, are not neurological but are instead dissociation, derealization, depersonalization.<br />
<br />
I never understood my psychiatrist's terming this experience "dissociation." To me, dissociation is the mind separating from the body in order to cope with trauma. I have no trauma to point to. So I said as much to the psychiatrist attached to the outpatient program, and he said there doesn't need to be a traumatic trigger -- sometimes the trigger is extreme anxiety. But as we spoke about it, I came up with, "I don't know if this makes sense, but with the pain, I find I go through tiny little PTSD events, terrified of peeing, of setting the pain off, of" -- okay, I can't write this out now. I need the compartment I'm in right now.<br />
<br />
But the psychiatrist agreed with me. I needed to hear that my PTSD explanation makes sense.<br />
<br />
That my terror might be neurologically based was both frustrating -- another health problem -- and possible relief -- there's nothing inside me that will break from it; it is just an illusion. That the terror is probably psychological is not the most welcome conclusion. I do feel like the terror will break me someday. It has, actually -- I spent a month confined to the house due to agoraphobia, unable even to get the mail because the world would start tipping sideways when I did. To fear that it will break me again is normal, I tell myself. But that doesn't allay my fear.<br />
<br />
I wish I were better able to explain the continuous tiny PTSD the pain brings. All I can say now is that I can't believe this is my life. I'm staying with my parents because I don't want to see my future. I had depression and anxiety before the pain, but I believe I would've stabilized and gotten better without the pain. The pain is a monster. It is trying to kill me. I am trying to ignore it. I'm doing it for the people I love because on a personal level, I can't defend this life.<br />
<br />
I am safe. I am okay. I am in therapy five days a week and it is helping. I'm focusing on the present because the future is blank. I can't believe I've made it this far without collapsing. It used to give me hope, a sense of pride, something or other to look at myself and see how strong I have been. Now all of that doesn't matter. What has it gotten me? Here I sit, in pain.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-65858164340531126512016-05-16T13:50:00.000-07:002016-05-16T15:05:58.248-07:00Proven: I have interstitial cystitis I have interstitial cystitis. A new doctor put me on Elmiron, an IC med, and my pain dips to a point where I can hardly tell it's there at the end of some days. Sometimes it dips below a 2 in the middle of the day. This has never, ever happened before. The closest I got was when I was able to control my diet at an insane level when I was in grad school seven years ago. I've been on Elmiron several weeks now and I've reached the point where I can blog about the improvement with almost complete confidence that I have interstitial cystitis.<br />
<div>
<br /></div>
<div>
I've always thought I had IC but I've never been able to get a diagnosis. Even urologists wouldn't diagnose me with it because I rarely have the typical urgency and frequency. But I believed I had it because food is the main variable that influences my pain. If my pain were neurological or muscular, food would not have such influence over it.</div>
<div>
<br /></div>
<div>
I went to a new doctor, a gynecologist, who put me on a topical steroid, an estrogen suppository, and Elmiron. The steroid, even compounded, made my skin bubble. The suppository -- she says it's impossible, but I had the most painful lead-up to my period that I've ever had. The acid burn that is usually contained to my vulva spread up my abdomen. I could hardly walk. Maybe that was coincidence, but my period is due tomorrow and my pain hasn't risen above a 5 yet in the lead-up, and it certainly hasn't spread. (5 is average.)</div>
<div>
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<div>
She's the first doctor, though, who thought I had enough of a chance of having interstitial cystitis that I might benefit from Elmiron. Why it took me nine and a half years to stumble across a doctor who would try me on an IC med, I have no idea. Telling her how much food influences my pain was all it took. Bam -- let's try Elmiron.</div>
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Today I saw a therapist who specializes in helping women with these kinds of issues. My doctor recommended I see him. I'm glad I did. I'm so angry. I feel like I had ten years cut right out of the middle of my life. I feel robbed. I feel empty. I don't even know what I need to address in therapy. My feelings are giant but vague.</div>
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One thing I learned today is that I have to come to terms with eating things that hurt me. Eating them knowing they might hurt me. Hurting myself. The Herculean charge of eating perfectly to appease my bladder, and failing at it.</div>
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I'd always fantasized about writing this post, the one where I have all the answers. I am not in the state I thought I'd be. I'm more depressed, more anxious than my baseline. My cat died at the end of March, but I think I'm depressed and anxious beyond the grief of losing her. I can't tell why. So I can't come here and celebrate. I came here to write to you who might need the answer I've found.</div>
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If my pain continues to recede, I'm going to go away for a week by myself and be alone with the knowledge that yes, the day did arrive.<br />
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Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-20748352854367279872015-12-17T11:33:00.001-08:002015-12-17T11:33:39.046-08:00New pelvic pain article, best yetMy cousin linked me to <a href="https://broadly.vice.com/en_us/article/vulvodynia-and-vulvovaginal-sexual-pain-disorders-treatment">this article about pelvic pain</a>. It is the best I've read yet on pelvic pain but reading about pelvic pain always stresses me out and now I'm having a minor panic attack. Deep breaths...<br />
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So tired of this. Meaningless to say "so tired" after more than nine years. Amazing I can even feel that I'm tired of this. I must remember what it's like not to be in pain all the time.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-81449473519424450622015-11-08T20:54:00.000-08:002015-11-08T21:01:34.395-08:00Probiotics & Pelvic PainAn anonymous commenter left the following comment on <a href="http://madpeach.blogspot.com/2011/10/so-are-probiotics-evil.html">a post I wrote about the probiotic VSL #3</a>:<br />
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<<<br />
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<i>By the way I am male and have had similar issues from taking CytoFlora, which is a tincture of lysed probiotic bacteria. </i><br />
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<i>I have always had pelvic muscle tension, and it requires internal physical therapy (trigger point / myofascial release) to keep it under control. I overdosed on CytoFlora one day and could barely walk within two days. The effect persisted a long time until I saw the physical therapist. It has happened to me now three times over the years. I can't say I have ever come across anyone who knows why this can happen.</i><br />
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<i>I think that the junction between the colon and the rectum, right at the second fold of the rectum, is connected to the pelvic floor in ways that the PT literature doesn't describe. I think that the colon is tense (due to some unknown reason related to how much probiotic you took - VSL3 is very strong stuff), but as it is involuntary, I think the symptoms of trigger points appear at the boundary of the involuntary and voluntary muscles, which is right there at the second fold (I think). That is my theory.</i><br />
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<i>The funny thing is that for me, at a smaller dose CytoFlora is the only thing which actually reduced my pelvic muscle tension issues - yet at a larger dose it magnified them considerably.</i><br />
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<i>I would say if anyone offers you a specific cause as to what's happening in your colon why you are experiencing pelvic muscle tension from VSL3, take it with a grain of salt. They probably have no idea what is going on in there.</i><br />
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>><br />
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This is the first good explanation I've heard for the increased pain I had when taking VSL #3. And if it or something like it is at work in pelvic pain, the implications are huge. If pelvic floor muscles are sensitive to the state of the rectum, it could explain why so many who have pelvic pain find that food is a major pain trigger. It could explain why pelvic pain and IBS have such a high rate of comorbidity. It could even explain why pelvic pain often goes up before or with menstruation.<br />
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The rolling theory (in my head, anyway) has been that IBS and other digestive issues can influence pelvic pain either by causing the individual to clench pelvic muscles in response to digestion or by referring pain to the pelvis (maybe via some kind of regional inflammation). But if there's a specific point in the digestive tract that tenses under certain circumstances and pulls at the pelvic floor involuntarily, that would explain why it's been virtually impossible for many of us to identify the exact cause of our pelvic pain.<br />
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This makes me want to go back and do some crotch dieting again. Nothing I've tried so far took away my pain in any certain way. The best I did was on <a href="http://madpeach.blogspot.com/2009/02/q-tip-test-and-theory.html">a simple diet which I apparently managed last in 2009.....!</a> Oh my god! It is time to BELIEVE again! I need to read my own blog more often. :/<br />
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I also want a colonoscopy. I want a colonoscopy, people!Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-82829969561277636132015-10-02T13:40:00.000-07:002015-10-02T13:40:04.234-07:00Happy birthday, vulvodynia This is how living with vulvodynia feels<br />
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I'm finding it hard to deal with vulvodynia without blogging. I live alone so I can't turn and say OW when I want to be heard. I can't talk about it openly most of the time when I'm not alone because I'm rarely in private, one-on-one situations. When I am, silence comes over me about it. I don't want to complain, I don't want to make it all about me, I don't want to bore, I can't explain it all so it makes sense, etc. And I absolutely suck at reaching out for support. I'm introverted, and I've always been a private person in some respects. You can't tell by how my cooch is all over this blog, I know.<br />
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So I'm feeling more and more alone inside it because I'm not talking about it anywhere. I have to keep blogging or keep sharing in some way because this silence is exhausting. I'm starting to feel like I don't exist.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com4tag:blogger.com,1999:blog-2240355902210786734.post-38968210554195563662015-09-21T14:37:00.000-07:002015-09-21T14:37:03.766-07:00Tinker's CreekI am a girl. Appropriately, I throw like one.<br />
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I pick up rocks along Tinker's Creek and throw them upriver. I try to get them past a large rock in the rapids, "the goal." I make one goal. Appropriately, it is with the smallest rock.<br />
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I trace in my throw the shape of my brother paused in a photograph. He is a boy throwing a rock into a lake, his hand at the top of its arch. "Look how perfect," my mother said to me as we looked at the photo. The form, the balance of his body. I try that now at 35.<br />
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I pick up handful after handful of rocks. Appropriately, I am wearing a skirt. With each bend, I moon the steep wall of rock that is the river's opposite shore. I throw the small rocks at the big rock. I am getting better, but still some slip from my hand straight into the river. The wall lets loose some of itself, more gravel for the riverbed.<br />
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I switch to skipping rocks. The sun is low. The big rocks make big splashes, make rainbows in the air.<br />
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I sing Taps---<br />
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<blockquote class="tr_bq">
Day is done<br />Gone the sun<br />From the lakes<br />From the hills<br />From the sky<br />All is well<br />Safely rest<br />God is nigh</blockquote>
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---but the river carries on at the same rate, at the same volume. Had a human this fervor, she would be sick. But the river, it is at rest. This is it at its point of rest.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-74052221317505776832015-07-09T19:40:00.000-07:002015-07-09T20:39:21.862-07:00Signing off<div dir="ltr">
The hair that fell out of my head from all the steroid shots is back. When it's down, it's in cute little curls, like Audrey Tautou minus the face. But it doesn't stay down. It mostly does this.</div>
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It looks like the wind is blowing, but I promise you, it needs no wind.</div>
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There's been no change in pain since I started the IBS med. But I am only taking 2 pills a day right now. I can take up to 4 per day but they have to be 6 hours apart which goes against the recommended daily allowance of 8 hours of sleep per night so I've been writing to Stephen Hawking about how we need better math.</div>
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I quit my desk job to go back to serving full-time. I've been thinking about going back to serving for over a year. It never made financial sense. I had very little breathing room in my budget and a lot of debt, student-loan debt from a graduate degree I never finished and credit-card debt from car repairs and medical expenses. I got a weekend job at a restaurant back in August and funneled all my extra money toward my debt, which alleviated a lot of stress.</div>
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But in late winter I started funneling all my extra money toward my savings. My office's situation seemed tenuous. Then my cat got sick. Hundreds of dollars were flying out of my pocket to figure out what was wrong with her. So I quit my day job.</div>
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While I could manufacture 7,000 reasons why I had to leave my office job because my cat was sick, the real reason is that it just didn't feel right to stay. I had been working seven days a week between the two jobs. My office job was never going to be a career for me, and I was staying there because I was too scared to make a leap back to full-time serving. That fear fell away when I didn't know whether I was going to lose my cat. When I was waking up multiple times a night to get to her with something disposable before she puked. Everything fell away.</div>
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I took my cat to a second vet after an initial diagnosis of hyperthyroidism because I had a feeling her normal vet wasn't being very thorough. (A little birdie high-school-friend vet in Chicago wasn't convinced either.) The new vet said, indeed, the first vet wasn't being very thorough ("stupid," she said). She had me try to figure out why my cat was still puking on the thyroid med -- from the med itself, from the pill pocket she took with the med, etc. When no changes I made seemed to work and my cat puked four times one morning and I had to work at the restaurant, my dad came over to cat sit and my vet met me that afternoon, on a Sunday when she was closed, to take blood to confirm that the main problem was still hyperthyroidism. She gave me food for hyperthyroidism, told me to take my cat off the thyroid med completely, and gave me a med to treat nausea if needed.</div>
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The first vet had told me there is no dietary remedy for hyperthyroidism. As this blog has shown...</div>
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<span style="font-size: x-large;">doctors vary.</span></div>
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Well, puke puke puke, I started giving my cat the nausea med every evening. Somewhere in there was my last day at the office. Then, at the vet's suggestion (via email; very modern, this senior citizen), I kept my cat on the med until it ran out. It's been a few days off the nausea med and of course it's scary to say it, but she hasn't been puking. And she's gaining weight. Her face has filled back out (which I can apparently tell despite all the fur). Her appetite and behavior never changed, so it was as if I was the only one going through all the craziness and she was just puke, eat, puke, eat, run around, jump, I'm a cat, puke, eat, birdies!, birdies!, snooze, purr -- it was so strange. It's still strange. I put her food next to my bed so I can monitor her and it stinks to high heaven but it's a delight to see her eat. A gorgeous sight, like that Cure song says.</div>
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It gives me a lot of respect for people who take care of others hand and foot, like my grandma did with my grandpa. She did essentially what I'm doing for my cat except she did it for years and years and years and years and years and my grandpa lost almost all of his mobility over that time. He stopped even noticing the human equivalent of birdies! at some point, and it all turned into snooze. With it came dementia, in which my grandma sometimes became his mother. In which it sometimes seemed he was dreaming, the house growing floors around him, the Ohio River right outside the door. I can't imagine what it's like to watch your life partner decline like that, to be the one to force him to take his pills, make sure he eats, weigh him back down to reality, all functions of a nurse and very few of a wife. But her hand smoothing his hair down, one finger bent from arthritis -- the wife.</div>
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I'm still looking for a second job, and I still have to figure out a new medical plan (via the Obamacare marketplace). And right now, I don't ever want to see a pelvic pain doctor again. I am so, so, so, so over it. I am so done. I am so done that I'm surprised I haven't broken all of my possessions in the process of being HULK SMASH done.</div>
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I guess I feel like I'm fighting fate at this point and I need to give up. Here I am after 8.75 years with pelvic pain, every theory I could muster, doctors I can't number, and treatments upon treatments that have nothing to do with one another. I've taken jobs, quit jobs, gone off and on psych meds, been single, been in a relationship. I've dwelt in all four houses asking questions, mental, physical, emotional, spiritual. I've done more research than I can stomach. I've been writing this blog for almost seven years. I've made many friends through it, all invaluable.</div>
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I guess when I started this blog, I thought I was writing toward the end of the story. Someday it would arrive. I'd be all or mostly pain-free, and it'd be a big happy time for me and for people like me who needed the data I'd gathered. But while I made some progress a few months ago with nerve blocks on the left side, all attempts to address the remaining pain have failed, and the remaining pain is no less a monster. Now we're treating my pain as if it's coming from my intestines, which is a fine theory but nothing new. It's cycle 3 or 4 of the gastrointestinal theory.</div>
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If I could, if I had the resources and the liberty, I'd go on a massive vision quest. I'd hike the Appalachian Trail or drive to every state in the country or kayak from Pittsburgh to New Orleans. I'd go long enough and with little enough to forget everything and find new eyes. But right now, it doesn't make sense.</div>
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Instead, my gut is telling me to do the same quest while standing still. And in order to do it, I have to let everything go. I have to let hope hang by itself, unmoving.</div>
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I might be back. Til then, here's to great storytelling.</div>
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Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com2tag:blogger.com,1999:blog-2240355902210786734.post-68977460957507751272015-06-19T08:19:00.000-07:002015-06-19T10:28:37.753-07:00IBS IBS IBS IBS IBSWhen I was in college, I had EXPLOSIVE DIARRHEA. When you're a freshman with explosive diarrhea living in a coed dorm,<br />
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1) You think explosive diarrhea is totally not abnormal and don't go to the doctor;<br />
2) You instantaneously train yourself to hold in explosive diarrhea until<br />
3) The floor is entirely quiet because, you convince yourself, everyone is at class or having quiet but distracting sex;<br />
4) You go to the bathroom and explode diarrhea out of your body;<br />
5) And after some time, you learn how to explode diarrhea out of your body without making a sound.<br />
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I was pooping out water. I don't know why I didn't go to the doctor.<br />
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Over time, I figured out my diarrhea triggers: soft drinks, coffee, fried foods, fatty foods, beer, chocolate, candy, Wheat Thins. I could eat a single Tootsie Roll and have to run to the bathroom. I avoided those foods, and my bowel issues got better. At some point I figured out I had irritable bowel syndrome.<br />
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By the time I was in my mid-twenties, my IBS had become mostly constipation. I ate high-fiber cereal, and it only backed me up. When my vulvodynia started in late 2006, my cousin Kim had already gone gluten-free as she and her son have celiac disease (<a href="http://www.glutenfreeislife.com/">here is her blog</a>). So about 7 months into vulvodynia, I stopped eating gluten.<br />
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It helped. I started pooping better and my headaches went away. I had been napping most days for hours, and that stopped too. And my vulvodynia improved a smidge, probably because there was much less going on in my abdomen in general.<br />
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Today I saw Dr. Abdelmalak again. I went in with no news to report. For like two seconds after my last right-side genitofemoral block, my pain got better. But it expanded again, and I decided I needed to hammer home with Dr. Abdelmalak my observation that food is a major contributor to my pain.<br />
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I thought Dr. Abdelmalak would suggest another nerve block or another attempt at cryoablating the nerve. But instead, after some discussion and an examination of my abdomen (pressing it all over) and finding that my genitofemoral trigger points are not so bad right now, he decided to focus on IBS.<br />
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A-ha!<br />
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It was kind of strange. We talked a lot about pressure to the lower abdomen -- how if I cough, sneeze, laugh, when my bladder fills, when I move, when my cat steps on my belly, how with any added pressure my pain gets much worse (when I am having a bout of laughter, I find myself contorting to relieve the normal downward punch of the laugh. It's kind of awful, but laughter is so wonderful). And from that conversation and a quick question about "alternating diarrhea and constipation" -- "Yes, I have IBS" -- he decided to put me on Bentyl, a med that treats IBS. (As a side note, to add TMI to TMI, I can feel gas moving across my lower abdomen, centered over my pelvis, because it presses down and shoots my pain up. Previous doctors have told me that my bowels don't go that low and that the constant pain I had in my lower left side while still eating gluten was my period, not my bowels. Ha! Screw you! I know what my period feels like, dingbats! I wish I could write condescending letters but I don't even remember the doctors' names.)<br />
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As in college, treating my IBS outside of avoiding food triggers has never occurred to me. I knew about Bentyl, but I was always like, "That's for <i>them</i>." I don't know who <i>them</i> is if it's not me. Maybe my explosive diarrhea never seemed to be a serious problem -- after all, it wasn't dysentery. And maybe not pooping for a week (or two when on Effexor) seemed more a medical marvel than something to address.<br />
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Edit: I remembered where I remembered Bentyl from. I was actually prescribed it years ago by a gastroenterologist. I wrote about it on here on <a href="http://madpeach.blogspot.com/2009/05/fuck-doctors.html">a post with a nasty title</a>. It was at the outset of my Summer of Despair, after which I gave up on seeing doctors for a while. I don't think I took any of it. I think I was too deep into the mental state with which I chose the title of that post.<br />
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I'm to take Bentyl up to 4 times a day (every 6 hours), and Dr. A says it'll take a few weeks to start working. Alongside Bentyl, he prescribed something I've always thought I should have -- a muscle relaxer. OMG! I'll only be able to take it at night, but I'm interested to see if it has any effect on my pain.<br />
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And then I walked away with my paperwork. I've heard a few elderly people say, "Don't get old." I always think, well, I'm already in pain all the time. I get that more things happen in a person's later years, but I feel stuffed up on medication as it is.<br />
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And I have a hilarious list of issues, some of which seem redundant, some of which I thought I didn't have (manic-depressive NEC; I thought my doc and I decided it's not accurate for me, and I had to google NEC, and it seems like it's the same as NOS, not otherwise specified, but I have no idea why there's a different term and why it's "manic-depressive" and not "bipolar disorder," and my anxiety should be "MFing anxiety," not "anxiety state NOS"; listen up, I'll tell you how to specify it: it's a MFer) -- and some of which aren't listed (cluster headaches, arthritis of the hip, even IBS).<br />
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These lists made me laugh. If I live out my natural lifespan, it'll be hilarious to see how long these get. I think my grandpa was on 7,000 meds when he died and probably had 40,000 items on his "Problem List." He died the day before his 92nd birthday. Life accumulates.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-19337480789858087662015-05-15T09:41:00.000-07:002015-05-15T09:41:31.728-07:00Post-block-again-update-pain titleOkay, so, my period is over, the yeast are back to their normal subsensory squirmy existence...<br />
<br />
Mmmm!<br />
<br />
And my pain is back to a lower-than-usual level. I don't have the burning I had on the face of my vulva when I was trying to kill the yeast using methods meant only for normal vulvas. Vulvodynia does not like Monistat, nor does it like even the tiniest drop of tea tree oil, which is not normally a bad method for fighting yeast according to <a href="https://www.msu.edu/user/eisthen/yeast/">the ultimate guide to yeast infections</a>.<br />
<br />
I think my skin's overreaction to topical treatments (even lidocaine; I need the compounded version) means there is some idiopathic vulvodynia going on, something that is inexplicable. Maybe it's driven by neuralgia, but I think it's just stupid undefined stupidity that a lot of women have that is undefined and stupid.<br />
<br />
My pain still doesn't like most foods, and it's not thrilled with sitting, and it doesn't like moving around, and peeing is still painful. But it's better by a degree or two. Wait. Wait here.<br />
<br />
I went to the bathroom and punched my stomach a lot. The site where the doc gave me the shot is really really sensitive. Two weeks later? And the general area on each side of my bladder/uterus/whatever, the pantyline but spread inward, is really sore, as usual. Those are the genitofemoral trigger points. But poking everything didn't radiate pain to my vulva, which is good.<br />
<br />
I feel it's important to remember that my pain STARTED as pain just below my bladder/above my clit/however you want to put it, and it included increased pain with peeing that would RING and RING and RING for a half-hour or so after peeing and then die down. And moving was problematic. In other words, maybe getting rid of the pain means moving back through the stages of pain I've had. Peeling off the layers down to the start of it. Because it has certainly gathered more and more pain-fluff around itself over time.<br />
<br />
I can't give up peeing, and I can't stop moving (well, if I want to get paid), but I can stop sitting so much and I can keep eating carefully. GOD EATING CAREFULLY IS SUCH A BITCH!!!!!!!!! I can't eat fruit anything (bananas are okay) or tomato anything or spicy anything or sugar anything or coffee or tea or chocolate or anything!!!!!!!!!!!!!!!! Gluten-free is NOTHING COMPARED TO THIS SHIT. I wrote my doctor a note on MyChart telling him DUDE YOU NEED TO LSITEN TO ME WHEN I SAY FOOD IS BAD (minus caps, typo, "dude," and anger). I don't know if there's anything he can do to help except tell me not to eat things that hurt... THIS DIET IS RIDICULOSU. I really don't think I have interstitial cystitis but my pain is so sensitive to food that I feel like there must be a connection. A lot of people with pelvic pain report that their pain is sensitive to food. WHY WHY WHY WHY I'm not editing this blog post. It sucks but this is the only place I write down crotch shit and I've gathered that seeing someone else freak out about her crotch helps other people with crotch problems. THIS IS ME FREAKING OUT!Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-1211098268001591042015-05-12T10:36:00.000-07:002015-05-12T13:05:32.494-07:00Hope sucksMy pain was better for a bit and now it's back to bad, and it's clear that food is the worst thing ever invented by man. Eating makes everything worse. I'm so exhausted by all this. Hope is the most exhausting thing ever invented. I am so tired of it.<br />
<br />
I can't believe I have this pain. It doesn't seem real. It seems like I should be able to think myself out of it. Like when you're in a dream and you die and you're like "Okay, let's say I didn't die" and you're not dead anymore.<br />
<br />
I am running through Duolingo.com brushing up all my French categories and today I had to translate "La tortue est verte" -- the turtle is green -- and I realized it's been a long time since I thought about how turtles are green. I know it's a grownup thing, that more items populate the mind and we don't care what color turtles are anymore because we know they're green, it's a fact, we're done processing it. But I don't want to stop thinking about how turtles are green. That seems like the most important thing in the world.<br />
<br />
It's sensory. "The turtle is green" is a way of saying there are a billion things to sense besides pain. It's just hard to sense any of them when you're in pain. And after a nerve block, all I do is monitor my pain. There's no other sensation that matters.<br />
<br />
I don't want to keep doing the nerve blocks. It's much easier to be in pain than to keep hoping for the pain to stop.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-62455899364096561762015-05-06T07:53:00.000-07:002015-05-06T07:53:42.167-07:00Post-another-shot postI'm hella depressed. These shots always stress me out, but I always forget how much. And other stresses are adding together to make one big pile of Netflix.<br />
<br />
My pain has changed. In fact, it's changing all the time. I have some burning, but I think I also have a yeast infection. (TMITMITMITMITT.) So I can't tell if I really have burning or if I just have a party. A party I've tried to douse with things that burn so bad (Monistat) that I can't keep using them.<br />
<br />
There's this thing out there called YeastAway or something stupid. It has boric acid in it along with other less proven yeast remedies. And it doesn't burn. And I have to find it but you have to keep it in the fridge so I have to go to the places where they keep things in fridges but all those places are much farther away than depression wants to drive. Well, I went to one. And they only had regular probiotics. No YeastThingThatGoesInTheCooch.<br />
<br />
The good thing about YeastWhatever is that I rarely have to use it more than a few days. So I keep the leftover things in my fridge until beyond when I probably should and use them whenever I feel yeasty and so far I haven't started any new species that I know of.<br />
<br />
I think Amazon carries it. Maybe one of these days I'll check.<br />
<br />
The other change in my pain is that, like, imagine there were a rod poking through your clit and into your bladder. And as you move around, that rod zings and pinches and zaps you. But if you don't move, you can't tell the rod is there. This pain isn't new. I've had pain with movement all along. It's just extra-zingy now, and it's also extra-focused. It used to be spread all around in three dimensions and now it's essentially one-dimensional pain. And I don't know if it's like this because other parts of my pain have peeled back or if it's a new and maybe temporary phenomenon caused by the nerve block.<br />
<br />
Once my crotch recovers from the Monistat burn (tried it again this morning, duh duh duh duh duh, it's like I tripped and sat on my iron for a minute), I might be able to tell what's going on. In the meantime, I'm going to try to leave work right when it's time to leave instead of curling up on my desk to take a nap.<br />
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I have been taking a nap at work after work for months. Not every day. Just a lot of days. For a long time I was curling up on the floor and then one day I was like, the floor sucks! It's 0.125" of carpet on top of concrete! I'm sleeping in this 42" space instead. And it works.</div>
Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-41399930867091320152015-05-01T18:15:00.001-07:002015-05-01T18:15:50.305-07:00Nerve block #83747474838229<p dir="ltr">I posted this on Facebook today:</p>
<p dir="ltr">Some cultures are superstitious about the number 4 because it is a homophone of "death" in their languages.<br>
Yesterday I had the 4th right-side genitofemoral nerve block that immediately took away my pelvic pain.  But none of the 3 previous right-side blocks have resulted in continued relief of my right-side pain.  And while my left-side pain is still low, the right side turns out to be the main dragon down there.<br>
What that means medically = a lot of big words.<br>
What it means personally = we die & are reborn many times over the course of our lives.  These years of pelvic pain have seemed to be cycles of death without rebirth.  Every time I think I have finally completed a cycle of death, I resuscitate to something that is not quite life.  The pain is still there, and I am still in every moment managing it while carrying out the actions of a living thing.<br>
Let 4 be worthy of superstition.  Let it be synonymous with death; let my pain respond to the steroid this time and, if complete relief is impossible, let it at least lessen to some degree.  Give me space to forget once in a while that I have pelvic pain.  Moving around yesterday while the lidocaine was still in effect, I remembered how easy it is to get off the couch, to step over the cat, to do all the daily functions I force my body through.  I am willful; I am proud; I do things my pain doesn't like because if I can't kill it, I can at least tell it to fuck off by ignoring how it whines.  Maybe I should be more careful with it, but I am too angry.  If it is a dragon, I am one too.<br>
If I manage to kill my pain someday, I don't know what my life will look like.  Pain and anxiety are by now my life's ballasts; I don't know if there is anything else holding its shape.  If I crush both, will I fly up like a feather?  How will I reconstitute into something stable and alive?  If I don't look to the other side, where I am rid of these things, will they ever leave me?  Are they still here only because I am too afraid to let them go?</p>
<p dir="ltr">*</p>
<p dir="ltr">I just want to add a few notes.<br>
- This is actually right genitofemoral block #................ 7? But only 3 previous right genfem blocks caused immediate pain relief.<br>
- The skin at the site of the nerve block was still numb this morning, and even tonight when I removed the band-aid (I always forget to remove them) it felt numb in a subtle way. I think the doc numbed the site extra extra extra well this time as I can usually feel the nerve block needle poking around and the actual block usually hurts as a consequence. I couldn't feel it at all yesterday -- just the slight pressure of it moving into place. The doc, as usual, let me watch the needle move around on the ultrasound screen as he injected the block. I think it would make some people sick, but it calms me down.<br>
- The site of the block has, at the same time, been very sore all day, and it seems to be getting worse. I'm watching for infection. The pain is mostly with movement.<br>
- Peeing this morning was still mostly pain-free, but shortly after I got out of the shower, my pain shot up like a firecracker. It's been up and down all day. The pain is still almost entirely on the right side.</p>
<p dir="ltr">I'll keep you posted about progress.</p>
Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-83723491123204215482015-04-30T07:28:00.000-07:002015-04-30T07:29:54.298-07:00Such vulva<div class="separator" style="clear: both; text-align: center;">
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Such vulva.</div>
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Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-71881323883077094522015-04-13T07:29:00.000-07:002015-04-13T08:06:58.632-07:00A sort of PTSDI mentioned in passing a while ago that I feel like I have a sort of post-traumatic stress disorder about my pain. I don't know if PTSD is the right category for it, but it goes like this.<br />
<br />
A couple weeks ago I developed a UTI. My pain grew over a few days, and I didn't think it was a UTI at first because I've gone through flares like that before without having an infection. Then I went upstairs to pee while working at the restaurant, and I could hardly walk back down the stairs afterward. Back on the floor, I teared up, half because I was in pain and half because I was so pissed off at being in pain. The other servers let me go home early. I knocked myself out with gabapentin and slept.<br />
<br />
The next day, I was okay at my office job, but that night I started having blood in my urine. I was up all night and left my boss a message around 3 or 4am letting him know I'd have to stay home. The pain at this point is invisible in my memory. All I can remember are the effects of it. That I was on the toilet a lot. That I was scrambling for any medicine that might dull the pain. That I could hardly feed my cat because moving was so difficult.<br />
<br />
I asked my mom to bring me UTI test strips. The test came back as usual, leukocytes but no nitrites. Nitrites are a sign of bacterial activity. I figured I was just in a bad flare and I'd wait for it to pass.<br />
<br />
My mom also brought me pyridium, which eases pain from UTIs. It helped. I took cranberry pills just in case. At the end of the day, I felt like the pain was going away. I relaxed in bed, had renewed confidence against the pain, slept easily.<br />
<br />
I woke at 3am out of a dream where my pain was a woman crying for me to act. I ran to the toilet, and in the dark, all the orange from the pyridium looked like blood. Maybe there was also blood. But it is good that my urine was any color but normal. I forced myself to shower, took my cushion in my car so I had a chance at driving, and went to the closest ER.<br />
<br />
I was the only one at the ER. Everyone who talked to me was a man. I realized I'm not used to telling my story to men. But it was as if "pelvic pain" was already in their language. They didn't ask how or why. I might've said something about neuralgia and how I didn't know if it was a UTI because the pain can get so bad without one. The doctor said he'd treat me for a UTI anyway. I made it to the drugstore. I made it home. I took the macrobid and went to sleep.<br />
<br />
Over the next couple days, the pain went down. But it still fluctuated. When I had finished taking the macrobid and the pain was still fluctuating, my mood started flipping all over the place. In the bathroom at work, I'd panic at the toilet paper, unrolling unrolling unrolling it, pressing my nails into the wall. I analyzed the rate of change of pain as I peed. If it got worse at the end, that meant the UTI was coming back. I panicked at home and in the car and in the grocery store and any time the pain upped. Running around the table chasing my cousin's son, a crackling fire. I wanted to sleep forever. I wanted to die. Depression tugged me underground, weights on the line.<br />
<br />
My period crept up. I felt it all over my body. It took forever and a day to arrive. I kept saying the pain was because my period was coming, but my period wouldn't come.<br />
<br />
Now it's here, and the pain is normal, and I realize how terrified I was for days and days, someone hammering nails into my bones.<br />
<br />
It's been like this the whole time to varying degrees. Always fear. Always fear that it will worsen. I have no trapdoor. No vicodin or tramadol or anything of the sort. No escape valve. The only thing I can do is knock myself out beyond sensation with gabapentin.<br />
<br />
With chronic pain, you're always thinking about what's next. Vigilance. The leopard prowling in the dark.<br />
<br />
And one of the things I hate about it most is being alone. Driving to the ER alone. Being on the toilet alone. Crying alone. Having no hand to hold. Being at work unable to say it.<br />
<br />
I have lots of support. But there is no one always with me. I have no one at home but my cat. Sometimes, when I've been at my worst, she has climbed onto my chest, curled her paws under her, and closed her eyes. Like a leech siphoning it out of me. And I lie open to her as the ocean to the sky.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com3tag:blogger.com,1999:blog-2240355902210786734.post-26340393193016385282015-04-06T10:49:00.002-07:002015-04-06T10:50:24.399-07:00YogurtHypothesis: eating a giant bowl of plain yogurt short-circuits a flare.<br />
<br />
Evidence: 3 confirming instances.<br />
<br />
Question: whaaaaaaaaaaaaaaat?<br />
<br />
I had a UTI, so I started shoveling yogurt in to stave off a yeast infection while taking antibiotics, and every time I've done a big shovel mid-flare, the flare has fizzled out.<br />
<br />
Maybe this is a fluke. I've definitely shoveled yogurt in before.<br />
<br />
Standing here at work, hardly wanting to move because I overindulged in jelly beans and other bunny things at Easter, I chugged milk and nothing happened. I almost never drink milk. When I do, it's a pain reflex, like, reduce the acid or something. I don't know. Milk seems like it can fix pain, right? Like it'll put out the acid burning my vulva. But no, no.<br />
<br />
So I shoveled in some yogurt because milk will give me a tummy ache and I'm still on antibiotics anyway, and now I'm sitting here hovering around a 4 pain-wise. Maybe even a 3. Instead of hot-burny, my vulva feels ringy-cool. This all makes sense to someone out there.<br />
<br />
I know better bowels mean less pain, but I've never observed a direct, near-immediate link between yogurt and my pain before. Sugar and my pain, yes, Immediate. So.... yogurt is the anti-sugar?<br />
<br />
Of course it is. But immediately???????<br />
<br />
Whatever. Now that my birthday's passed and there are no candy holidays until Halloween, I'm off sugar. Honey and maple syrup are still okay unless I find that they trigger me (mixed evidence). Most fruits are not okay. So I will be feeling better just from that change.<br />
<br />
This is the end of my very quick blog post that is the equivalent of running up to all my vulvodynia friends and shouting my new amazing news! Unfortunately, I have no in-person vulvodynia friends to run up to. Hi out there!Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com4tag:blogger.com,1999:blog-2240355902210786734.post-18054342621687126992015-03-18T08:11:00.002-07:002015-03-18T08:17:58.326-07:00I have to eat betterYesterday before and after my doctor's appointment, I wanted to die. I wanted the elevator to stop and no one to find me. I wanted to find some water and sink myself in it. It's not good to tell people you want to die. They freak out. But it is a common thought when you have chronic pain. I've heard countless others say it. So I might as well write it here. If you have chronic pain and want to die, you're nowhere near alone.<br />
<br />
By the time I had driven to Target to get my refill and sat in my car in the parking lot for a while listening to Ace of Base, I didn't want to actually die. So I decided I would pseudo-kill myself. I went home and jammed ice cream, Cheetos, white-chocolate peanut butter, and wine into myself. It turns out not to be a lethal combination, even at high doses. Even coupled with chick flicks.<br />
<br />
Of course, my food choices were not random. All of those things (save maybe the Cheetos, but I did eat the whole bag) are bad for my cooch. Murderously bad. It was an act of vengeance, all of that food and wine and chick flicks. A torture. Don't tell me that I can't torture my cooch without torturing myself. I mean, of course I can't. But it's sort of like self-flagellation. I was whipping the part of me that is awful.<br />
<br />
So today at work it's don't-sit-down day. Don't-eat-wrong day. Don't-not-pee, don't-not-drink-water, don't-pee-too-often day. Don't-listen-to-that-Nora-Roberts-book-you-have-checked-out day.<br />
<br />
Yesterday, my doctor said I am one of his favorite patients. Yay! Because I ask questions and I read about my problems and I do what he says... wait... my mind hopped over to food, the main thing I haven't been doing to improve my pain. I haven't directly disobeyed him because he doesn't believe how much food influences my pain and so hasn't given me strict dietary orders.<br />
<br />
So it makes sense that I went home and tried to kill myself with food.<br />
<br />
I have to eat better. I have no willpower. I suck.<br />
<br />
I have to eat better.<br />
<br />
I have to eat better.<br />
<br />
Eating better won't cure my pain. But coffee, sugar, chocolate, wine, alcohol in general, spicy food, acidic food, these are all acts of vengeance every time I engage them. I can't predict exactly how my body will react, but it's like swallowing a spoonful of some radioactive substance and hoping the atoms don't decay before I poop them out.<br />
<br />
I know that self-injury is part of why I don't eat better. I hate my pain, so I eat as if enough bad food will suffocate it. I did this in my last relationship, having horribly painful sex as if I were a wolf raising my hair and baring my teeth. It is all irrational, and I think it's quite normal. I'm acting out my hatred. I'm being human.<br />
<br />
I know I'm getting better. When I'm not in a flare from food, the left-side pain is so low as to be invisible. The right side still flares by itself, and it still packs a gigantic physical and psychological punch. But I want to be a good patient. I want to give these nerve blocks the best chance for success.<br />
<br />
The nerve block I had in my hip a few weeks ago did nothing for my pain. Not even my hip pain. So yesterday, my doctor examined my genitofemoral trigger points again and BAM, down the pain shot from the right trigger point to my vulva. I'm going back for another right genitofemoral block. This is the nerve we cryoablated. It should have died. It must die. I will not try to kill it with food. I will not try to kill it with food. I will not try to kill it with food...Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-736259365346159832015-03-05T09:29:00.000-08:002015-03-05T09:29:29.951-08:00WorkI know I am getting better. It clicked in my mind, all the data. I've told you it all already, but it wasn't until I gathered enough data over a long enough period of time that it clicked in my mind that I am getting better.<br />
<br />But I've been in a pain flare for over a week, and it is hard to keep my head up.<br />
<br />
Sometimes I flash from another universe back into this body and I see my pain as if it's new. It makes me want to sleep.<br />
<br />
I thought I was out of the flare over the weekend, but maybe it was that I was standing. I have been sitting at the office. I am so tired that I don't want to stand. But my pain rises and rises, and I think it rises over the course of the week.<br />
<br />
I wrote this poem about it while at work. I go to the bathroom and it is terrifying to pee, but it is also the only place at work I can show that I'm in pain.<br />
<br />
Like a lightning bug<br />
I stop my blink<br />
and settle down to bed.<br />
Still the day rolls<br />
and the silence rolls<br />
and there is not a scrap of shadow<br />
to hide in.<br />
I fold<br />
like a moth<br />
with no light to chase<br />
and grip time and time and time<br />
before the unfolding.<br />
It is so bright here<br />
and I am empty,<br />
all white,<br />
I am a starved belly<br />
feeding on gristle<br />
without a body<br />
to hold it.<br />
I settle<br />
into soft ground<br />
as if a weight greater<br />
than my shape<br />
and wish for the plunk<br />
plunk of rain<br />
to help me sleep.<br />
I am a shell, a<br />
beetle,<br />
I cannot believe<br />
how thin my wings<br />
that crumple like tissue<br />
inside me.<br />
I cannot believe<br />
they lift.<br />
I am<br />
an antlion.<br />
I carve my cone<br />
into the sand<br />
and wait and throw<br />
and digest.<br />
That I am so tricky,<br />
so clever,<br />
is my distraction.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0tag:blogger.com,1999:blog-2240355902210786734.post-78649870025459241392015-01-30T09:21:00.000-08:002015-01-30T09:21:20.477-08:00How<a href="http://www.nytimes.com/2015/01/25/opinion/sunday/nicholas-kristof-wheres-the-empathy.html">This article details the how</a>. How a life can tumble away from itself.<br />
<br />
Julia Cameron, in her book <i>The Artist's Way</i>, suggests that God, or god, or "god," or the universe, has a pact with us about our creativity: if we take care of the quantity (the rate of creative output), god will take care of the quality.<br />
<br />
Universe, if I take care of the present, please take care of my future.<br />
<br />
I honestly have not been tending the present.<br />
<br />
I have been whitewashing my past so its events look like guidance, rearranging it like it is all throw pillows on a couch.<br />
<br />
I have been looking at a face fifty years from now, features grown subtle under soft flesh.<br />
<br />
I have been flinching at forty, at what my life won't be because I've miscalculated my trajectory every time I've aimed.<br />
<br />
I forgot, all this time, that half my life ago, I swore I wouldn't collapse around career, marriage, children.<br />
<br />
I swore I wouldn't fold up all of my existence and measure it against three data points.<br />
<br />
I didn't know then how difficult it would be to strike out alone and walk a course undefined.<br />
<br />
Life gives us models to make life more efficient.<br />
<br />
I feel like I have no model to follow.<br />
<br />I have to carve it myself and, like Michelangelo, chip away all the parts that are not David.Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com1tag:blogger.com,1999:blog-2240355902210786734.post-76856099977467812642015-01-28T10:13:00.000-08:002015-01-28T10:22:57.010-08:00Carry my joy on the left, carry my pain on the rightMaybe I should've known, dancing my limpy dance to "Who Is It?" in my apartment in 2008ish, that Bjork's lyrics were a truth in my own life...<br />
<br />
<i>Carry my joy on the left</i><br />
<i>Carry my pain on the right</i><br />
<i><br /></i>
<br />
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<i><br /></i>
That's how my pain is now. I get glimpses of how little pain there is on the left. I know it best when I insert/remove a tampon and I feel pain only on the right. I want it to be wonderful, but it is confusing. The pain is still bad all the time even though it's smaller now. I can't tell the left side is quiet because the right side is still so loud.<br />
<br />
I can't look back on bad events in my life and see the good. My last relationship, my time in college. I only see the bad. I wonder if the mind does it to keep the body from tripping again into the same situation.<br />
<br />
I am dating, but if I sniff my ex-boyfriend in someone, I jump ship immediately. It is probably better to do so, but I have never had such a primal aversion before.<br />
<br />
I am dating a guy who is many good adjectives, but I am not swooning because I'm afraid I'm wrong.<br />
<br />
Dating him is like trying to get a Rube Goldberg device started against a wind. And I think it is because I am a chaotic pendulum, carving out a system predictable from above but not from inside.<br />
<br />
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<br />
<br />
I've always preferred night, but for several winters I've been terrified when the sun goes away. That it will never come back.<br />
<br />
My psychiatrist told me to take Vitamin D, that there's no point in getting a Vitamin D blood level because new research is showing that what is normal by lab standards may not be good enough for the brain, especially in winter.<br />
<br />
"Are you going to take it, or are you just saying you're going to take it?"<br />
<br />
I'm taking it.<br />
<br />
My psychiatrist in college told me that there is little depression in Iceland despite their being so far north and it's because they eat so much fish. She told me to take fish oil.<br />
<br />
I'm thinking a bell dress would be a better antidepressant.<br />
<br />
I would wear it all the time. It's amazing the things people don't tell you. I am getting better at not imagining what they might think. Like how they might say to each other that I never seem to wear anything but my bell dress. That my bells keep getting stuck in the janitor's vacuum but there is no bureaucratic recourse for the accidental dropping of bells from one's dress. That they are convening a weekly meeting to amend the company's conduct guidelines to exclude bell dresses. That their initiative has run aground when a kind-hearted soul likens my dropped bells to the pearl earring she lost down the drain in the ladies' room, requiring maintenance to disassemble the plumbing in that half of the building. That they are now considering limiting staff wardrobe to items permitted to those under 5, i.e., to everything that no one can swallow.<br />
<br />
That the head dinging is getting creepy.<br />
<br />
I admire Bjork because she vents herself so efficiently through her art. She shows me that I can vent efficiently too, that if I am worried about the sun I should scream that worry into the universe instead of reprimanding myself for being nonsensical.<br />
<br />
That if I am a pendulum with two legs, I should relish being jerked around by my tether because my tether is the reason for my swing.<br />
<br />
I have forever been a bundle of nonsense.<br />
<br />
I believe sometimes that I am wordless.<br />
<br />
I believe sometimes that my only language is the incessant whip of the nonsense inside me.<br />
<br />
One more picture of the chaotic pendulum:<br />
<br />
<i>Graph of the time for the pendulum to flip over as a function of initial conditions.</i><br />
<br />
Resemble much?<br />
<br />
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<br />Estherhttp://www.blogger.com/profile/13231523634115523348noreply@blogger.com0