whiskey in a teacup . com

Recently, Jared was browsing through video game titles on his Xbox.  There’s a “marketplace” feature that shows you images of the games’ cover art and lets you scroll through until you find one that looks interesting.  One game in particular had some sort of apocalyptic-looking theme, and due to the weird font I misread the title as “Blad Space” (it was, in fact, Dead Space).  This gave me a great idea for an interstitial cystitis themed video game, in which your character must survive (and save the world or whatever) by  consuming IC-compatible foods and beverages.  If you have coffee, it will deplete your power but you will live as long as you drink water for the rest of the day.  If you do something insane like have pasta with red sauce AND have a cup of tea, you die.

I was amusing the shit out of myself pitching this idea to Jared, and since he is hip to the IC scene he played along…but unfortunately, in the Venn diagram comprised of “people who buy video games” and “people who suffer from inflammatory bladder conditions”, there is probably not a lot of overlap.  Mostly because people who suffer from inflammatory bladder conditions don’t have many hobbies beyond complaining, injecting lidocaine into their urethras, and applying ice to their pelvic areas.  We know how to party.

For some reason, possibly having to do with the human being who lives in a heavy sac directly on top of my bladder, my IC has been flaring up lately.  As a result, I have pretty much wanted to kill myself and everyone else on earth, but I stay positive by reminding myself that this too shall pass (i.e., someday I actually WILL die!) and that there are worse things in this world than chronic, searing pain (things like…the Holocaust!).  I’m sure I’ll feel better soon enough, but until then:  meh.

I hate to blog while on vacation, but the world must know: like the fakey U.S. version, real European absinthe is most certainly not an interstitial-cystitis-friendly beverage!

On the bright side, I finally have a solid segue for the posting of this link.

A treacherous heat has befallen us here in New England. We had a very mild winter and I knew we were in for a terrible bitch-slap; it has now arrived in the form of several days of 95 degree heat and significant humidity. To combat this swampy terror, Jared and I engineered a system of cooling technologies to keep the condo in a more or less livable state. Our home is less than 1000 square feet, yet it’s challenging to cool because of its shape and the placement of the wall-unit air conditioners. One AC is located near our bedroom, in the dining area off the galley kitchen. We run that AC and use an oscillating tower fan to suck the cool air through the kitchen into the living room or directly into the bedroom, depending on the time of day. We don’t tend to run the AC in the home’s largest room because birds have started nesting in the unit and it’s easier to just stay out of that room altogether. As far as I can tell, this is the most efficient way of keeping the house cool, but it’s still 82 degrees in the living room. That’s not hot enough to make a person actively uncomfortable, but it does induce a sort of slug-like apathy. I tried sitting in the backyard for a while today, but ended that farce after about ten minutes when my sweat started to soak through my tank top. The neighbors are out back right now, drinking beers and gallivanting around as if they’re not acutely miserable. I just don’t get it.

Were that I could drink a beer of my own, I would, but I am on semi-bladder-lockdown after being in a holding pattern of pain all week. Unfortunately this pain crescendoed last night while we were at the movies, and though I tried to deal with it for some time, I ultimately concluded it wasn’t worth it to keep sitting there on the verge of crying, and we left about forty minutes in. I returned home to my sweet, sweet lidocaine injector and eventually fell asleep feeling ashamed and rather depressed (pain just isn’t pain without a healthy dose of guilt!). It is evident that unless I stop being an idiot and really start restricting my diet of all the acidic and otherwise caustic things I love to eat and drink, I won’t be able to break out of this rut and will just feel worse and worse. Genuinely, the notion of having to give up coffee to avoid being in pain is much more frustrating than the pain itself.

A few days ago I was trying to find a piece of bakeware. I was pretty sure I had this particular item somewhere in my possession, though since I am categorically a non-baker I had some trouble finding it. After searching through various shelves in the kitchen, I opened up the ubiquitous plastic bag repository cabinet. Everyone has such a cabinet in their home; all the plastic bags from the grocery store and other shopping ventures get stored there for later use as lunch bags, gym bags, or what have you. Since we moved into the condo last June I’ve been adding to and subtracting from the repository at a fairly consistent pace. At some point, however, a serious backlog was apparently created, and it consisted not just of the dinky little supermarket bags, but also of big thick clothing store bags, medium sized bookstore bags, gigantic Target bags, and everything in between. Long story short (ha, joke’s on you!), when I opened the door to this particular cabinet and started rifling through the bags, trying to get to the back of the cabinet where my bakeware was, I was nearly consumed by a veritable tidal wave of crinkled-up plastic. They tumbled out onto the kitchen floor, and as I gasped oh my god it’s full of bags! they began to uncrinkle and expand into an even less manageable mass of bags within bags within bags, scrunched together by the dozens. I tried to cram them all back into the cabinet, but the behemoth I had unleashed would not be easily tamed, and despite my efforts the cabinet door is still ajar.

I share this harrowing tale of bags and banality to avoid writing about the bladder pain flare-up I’ve been dealing with this week, and how I wept with frustration at one o’clock this morning and wanted to rip that accursed organ from my body and stab it with many knives. I think if I am in similar agony later tonight I will distract myself by organizing my massive collection of plastic bags, and perhaps also by punching myself in the face.

Yesterday I picked up the medications for my bladder instills from the pharmacy. For reasons that are unclear to me (despite the explanation the pharmacy tech gave after I was all, “But I don’t understand, these are prescriptions and you are the pharmacy!”), I wasn’t able to get them from the first place I tried. There’s nothing crazy in the recipe; the ingredients are an anesthetic, a buffering agent, a blood thinner, and sterile water. But the first place couldn’t order them for me. So I went to a larger pharmacy and successfully dropped off my pile of scripts with the young guy at the counter who smirked at me and said, “Lucky you, you get to do this to yourself!”

The next day I went to pick everything up, and I was somewhat anxious that things would play out like this. My nurse practitioner had warned me that some pharmacies are weird about dispensing that much blood thinner at once, even though for the purposes of my condition it wouldn’t be injected into the bloodstream and therefore would have no blood thinning effect, just a poorly-understood bladder-coating effect. I was prepared to play the “I’m a nurse” card and to give an in-depth description of my personal anatomy if need be, because these matters do not embarrass me, even when the pharmacy is located inside a busy supermarket.

In reality, the pharmacist did not directly question me about my problem but instead asked me about ten different ways if I knew what I was doing, if I had done this before, if someone would be helping me, if I was really going to do this myself, and told me that “that’s pretty impressive”, that “only a woman could handle something like this” and, finally, pushing a bag full of medication vials at me, “You’re ready to rock and roll.” Also, I didn’t scream “suck my dick!” at him and I wasn’t nearly as lovely as Julianne Moore. Alas.

During my three days as a twenty-five year old (days during which people have tried to tell me how young I still am), I have been to the urologist twice and have thrown my back out once. The next time someone tells me that I’m still young, Im’a cane-slap them. And then pour myself some prune juice and watch Matlock.

My first trip to the urologist was fruitful, educational, and painful. Finally I have someone in my life who not only understands my condition, but wants to help. I will be receiving treatment for interstitial cystitis. Treatment! Although I have spent my entire life adapting to this disease and learning how to deal with it, there are times when it gets the best of me. None of the therapies available ensure that I will not be in lots of pain many more times in my life. They do, however, offer me the feeling of being even marginally in control, which is really exciting.

The first treatment, which will begin next week, is pelvic floor therapy. The muscles around my bladder and throughout my pelvis are apparently extremely weak and tight. My doctor believes that some of these muscles share innervation with urologic structures, such that the ever-present tension in the muscles contributes to pain in the bladder and urethra. So I have to get physical therapy for those muscles to loosen then and make them stronger.

This problem is diagnosed during a pelvic exam, during which the doctor applies internal pressure to the bladder and various muscle groups. In a normal person, it’s not supposed to be painful. In me, the pain made me squirm and spasm on the exam table and felt like someone was breaking me apart from the inside. For reference, recall the scene in Terminator 2 when the T-1000 is chasing after the car and his arms turn into crowbars. After the exam, I felt like I had gone to third base with him, possibly while he was on a PCP-induced freakout. The exam lasted about one minute. The physical therapy will last forty minutes per session. Nonetheless, I am looking forward to it.

The second treatment will be self-administered bladder instillations, and this morning I met with a nurse practitioner for a demo session. She had an incredibly warm personality, which I appreciated as ten minutes after we met she was holding a mirror up to my womanhood so I could insert a catheter into my own urethra. I instilled a cocktail she had prepared of four different medications to soothe my bladder. She sent me on my way with a handful of prescriptions, a numb bladder, and a sense of victory.

Obtaining some of the medical supplies I will need is proving to be a minor challenge, as was finding a physical therapist who specializes in pelvic floor treatment and didn’t have a multi-month long waiting list. I couldn’t be happier, though. These treatments were always out there, but due to a combination of ignorant doctors and my own apathy, I never felt that they could be a reality for me. Though it was initially pursued out of agony and desperation, forming a relationship with this new urologist and getting treatment is one of the most mature things I’ve ever done, so I guess it’s fitting that it began on my birthday.

The best part, though, is that performing self-catheterization is totally bad-ass, and the notion of it will probably horrify my ridiculously squeamish friends more than anything else I’ve ever done.

Things continue to fucking suck around here, though I’m in pretty good spirits at the moment. My urine result came back negative for bacteria but contained “a massive amount of white blood cells, there’s no mistaking that!” according to my doctor. This means I don’t have an infection, but there is a significant inflammatory process going onside my bladder due to my condition. It hurts an awful lot. I fell asleep last night with a ziplock bag full of ice in my pants. I feel pretty!

I got referred to a new urologist but they didn’t have any openings until my birthday (the end of the month) which at first seemed tolerable because my pain was backing off a little…but now it’s getting all pushy and pissy again, so I’m thinking I’ll need to make some calls in the morning and beg for/demand faster service. I hate being a crybaby because some part of me feels like I deserve to be in pain for all the times I’ve been lazy and lame in my life when I could have been productive. I also have a really fucked-up relationship to the sick role due to being sick as a kid and learning how good it feels to be taken care of. I admit it. Intellectually, though, I know I need to get my pain under control. Less intellectually, it fucking hurts and I’d like for it stop hurting.

My current pain management technique involves drinking lots of water and listening to ELO on headphones. It’s better than nothing!

As I’ve mentioned before, I have a condition called interstitial cystitis. Essentially this causes the symptoms of a urinary tract infection in the absence of actual bacterial invasion; instead, the intermittent burning, urgency, and general searing misery are thought to be caused by some autoimmune reaction that destroys the inner lining of the bladder and urethra. As far as I can remember, I’ve had this my whole life, or at least since the bladder surgery I had at age six. For many, many years I didn’t know what it was and assumed that it was normal. I would occasionally mention it to my pediatrician, who was patently disinterested. Eventually I grew up, did some research, deduced what my problem was and saw several urologists who had no idea what I was talking about, and finally one who did. I was diagnosed via an interesting procedure in which I was catheterized and a caustic solution was instilled into my bladder; the point of the procedure was that in a normal person, this would not cause pain. In a person with IC, it would. And, lo, it did!

There is no real definitive treatment but I’ve learned to deal with the symptoms in a variety of ways. Avoiding certain foods, drinking tons of water, icing my crotch: the usual routine. I’ve refused a variety of medications and “pelvic floor therapy” (which is physical therapy that takes place inside your vagina) out of futility and the fact that, anecdotally, they don’t really help. Sometimes the pain gets overwhelming and I’m essentially rendered useless. I’ve lost of a lot of time from my life to this bullshit, time spent doubled over in bed or crying on the toilet, missing work, missing school, missing out on everything. A couple of years ago, my IC went into a semi-remission. I still got symptoms from time to time, but much less frequently and with much less severity: I was in mild to moderate pain maybe once or a few times a week instead of intense pain most days of the week.

Three days ago my remission went into remission. I woke up at four in the morning in an unbelievable state, and suffered in burning misery for a few hours until the pain died down such that I was able to stand up and walk around. I dropped off a urine sample at the doctor’s office just in case (sometimes I can’t tell if I have an infection because the condition so closely mimics a UTI). The next day I did much better, with some pain off and on, but was able to go to a friend’s birthday party and enjoy myself. Then I woke up this morning and was in agony once again. Jared went to the pharmacy to get me some bladder anesthetic/snake oil which has the curious side effect of turning pee a bright, garish orange color. It dulled my pain enough that by the afternoon I was able to get up and take a shower. It was pretty awesome.

Some people have it so, so much worse than me. I’ve had it worse than I have it right now. I’m nauseas and exhausted, but I cannot quite describe the elation and ecstasy that come from the absence of pain. When I hurt I just want to feel nothing. Nothing is incredible. I’m sure in a few days this flare-up will pass, or maybe the doctor will call and tell me I have an infection after all, and I’ll get some medicine. Either way, I hope that when sustained relief comes I will meet it with renewed productivity and zest. I’ve been doing well for so long that I almost forgot what it was like to spend entire days in a tug-of-war with my body, but because I’m either an optimist (unlikely) or an idiot (more likely) I feel some gratitude for my condition: it reminds me how lucky I am.

Slate’s Medical Examiner column recently described a new procedure used to treat one of my two bladder conditions. For some reason, the article fails to mention the disease’s name, which is vesicoureteral reflux:

“The problem prevents the muscular wall of the bladder from acting as a one-way valve when the ureters (tubes) carry urine from the kidneys into the bladder. If the valve malfunctions, then infected urine can get into the kidney, potentially leading to kidney damage, loss of kidney function, and chronic high blood pressure.”

As far as congenital conditions go, this isn’t terribly rare. Mine was discovered after a bout of renal infection when I was three years old, and I was started on a nightly antibiotic, which I took for years.

“Long-term antibiotics can suppress bacterial growth, but the underlying condition isn’t cured, just treated, and the risk of repeat infection is high if treatment is briefly neglected. Extended treatment also may encourage bacteria that cause infections to become resistant to antibiotics. The other traditional treatment is open abdominal surgery on the bladder, a very delicate procedure that requires a skilled urologist and often extended postoperative hospital care.”

Yup. When I was six, I had my right ureter disconnected from and subsequently reimplanted into my bladder. While he was in there, the surgeon also found a mysterious third ureter which didn’t actually extend up to the kidney, but was just sort of coiled into my bladder wall. I find that pretty interesting; for whatever reason, the formation of my fetal urinary structures was fuxored enough that it grew not only malformed parts, but extra parts too. Nice job, Ma. In any case, I wouldn’t classify the surgery as one that required ‘extended postoperative care’. I was in the hospital for four days, but this was in 1989; I bet kids who have the operation now are only in for a day or two.

“Now there’s a third option: In a recent paper in the journal Pediatrics, Drs. Richard Yu and David Roth of the Baylor College of Medicine describe successfully treating children by plumping up the tissue surrounding the ureter at the point it enters the bladder. They passed a cystoscope (a tiny instrument that allowed them to look and work inside the bladder) through the urethra of the anesthetized patient, identifying the point where the poorly functioning ureter entered the bladder, and injecting a thick gel just below the surface to plump up the region around the too-open mouth of the ureter to make it into an efficient one-way valve. The procedure, which doesn’t require hospital admission and takes about 15 minutes, was performed on 120 children between 6 months and 15 years of age. It was 90 percent successful after one (or occasionally two) treatments, with no significant complications (two kids briefly had flank pain).”

Hm. I wonder what the longevity of this treatment will prove to be. As for me, by the time I had the operation my right kidney was already pretty well fried, and has remained a small mass of junk ever since. Happily, though, it stopped getting worse, and despite having many bladder infections since then, none of them have traveled up to the kidney.

I wish good fortune to my young cohorts who are undergoing this new procedure, but hope that parents and physicians don’t shy away from the traditional surgery, since the anatomical correction generally lasts forever. Sometimes more invasive is better, in my opinion. When you’re dealing with kidneys it’s best not to leave anything to chance. Plus, the scar it leaves behind is rather fantastic.

Last night I was pleased to share with my dual J’s one of my favorite movies: Sick, The Life and Death of Bob Flanagan, Supermasochist. There are people in this world who would say, “I would rather not watch a dying man nail his cock to a board whilst I eat my cod and cous-cous,” and to those people I would say, “Get the fuck out of my house.” For the uninitiated, Flanagan was one of the longest-surviving sufferers of cystic fibrosis, famous for his various performance art pieces which mostly portrayed his intense involvement in sadomasochism, which helped him deal with his disease. I’ve long admired him for various reasons and was pleased that my dinner partners were enjoying the film.

This morning, though, I woke up feeling exhausted and depressed and short of breath; I wondered if I was channeling Flanagan, or maybe just feeling anxious about the doctor’s appointment I have scheduled for today. I always get a little uncomfortable going there; I’m cool with the let’s-stick-this-in-here bit, and the what’s-with-these-piercings bit, but I am loathe to bring up what I always bring up, i.e. my lifelong urinary dysfunction. My interstitial cystitis has been in a sort of remission for quite a while now, but no matter how little pain I feel, little shreds of bladder tissue still come out in my urine and it always smells awful, and they tell me I have no infections but I fear there’s some hidden e. coli in there somewhere (you can’t spell “escherichia” without “erica”!) and that my kidney is even deader than it was before and that it’s going to kill me someday. So I always get a urine culture, and it’s always negative, and they say it’s just the disease, and I say don’t tell ME it’s just the disease, I had to freaking diagnose myself after twenty-some years of pain and then you finally sent me to a urologist who had actually heard of my condition, and what the fuck do you know about it? Then there was the other urologist who told me that, guess what, despite the surgery I had to fix the malformed anatomy that was causing chronic kidney infections in my childhood (an issue unrelated to the IC), my right kidney still wound up 80% destroyed and nobody ever knew that because nobody thought to look between age 6, when I had the surgery, and age 18, when I got my own insurance and got the fricking screening done myself.

Flanagan’s disease was totally different and so many orders of magnitude worse than my own, and I’m not remotely into SM, but I do get the feeling of being at war with one’s body, and I do get the various frustrations and furies that go along with that and what they can make you want to do to yourself. It always makes me happy to see footage of him fighting the good fight. It even makes me a little less apprehensive about pissing into yet another cup and being told that I’m not normal, that there’s nothing they can do, and that they’ll see me next time.