I wouldn't drink that if I were you....

Once again, it was time for me to leave a urine sample in my urologist's office as part of the instillation process. Instillations are a fun part of having interstitial cystitis, since this treatment is a medicine that is instilled in the bladder through a catheter. Catheters are super fun and exciting instruments of torture. Wohoo!

This time I was lacking some creativity on what to write on the outside of my urine specimen cup. If you are a long-time reader of this blog, you'll remember that I like to write a bit of whimsy on the outside of each cup, just because. This was fun at first but then the nurse admitted that sometimes when she has a crummy day, she actually looks forward to handling my pee just because of the little statement on the cup. Pressure!

So, I resorted to asking for ideas on facebook. I got several, but the winning idea came from Scott Lovelis. He suggested getting a Mott's apple juice sticker for the cup. Now, I didn't have one of those hanging around but I did have a bunch of Mott's juice boxes and the cardboard thingo that goes inside the shrink-wrapped container of boxes. So I got out my scissors and packed the cut-out and some tape in my purse. And I giggled a little.

This idea only worked because I’m in pretty good shape, pain-wise, nowadays and I don’t have to use bladder pain meds very often. The pain meds make urine either fire red or an odd toilet-bowl-cleaner blue. Neither would be likened to apple juice.

I went into the bathroom to execute my plan. I decorated the cup, took the picture, and then realized I could never pee in it and not bump/knock off/mess up the Mott’s sign. So I had to employ a second cup and then poured the pee in the creative cup VERY CAREFULLY. I am very committed to this gag, clearly.

The nurse loved it, of course! She complimented me on my creativity. I had to admit I’d gotten the idea from someone on facebook. I’m pretty sure she still thinks I’m awesome.

To add to today’s fun, my regular nurse was training a new nurse. This nurse had never done a catherization before (and she still hasn’t; today she was just watching, thankfully) and so my regular nurse had to give a step-by-step lecture on the whole thing. “You see this? This is the urethra.” Wonderful.

Life. It just doesn’t get much better than this!

The "or not" part was all me. 

For more posts about Interstitial Cystitis, including all my crazy urine cups, click here. 

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This was just the first thing that went wrong today

"Roses are red,

Violets are blue,

IC sucks!"

That was my urine cup commentary for the day. My Interstitial Cystitis (IC) had been flaring up over the last week so I went in to get in instillation today. Prior to every instillation, I have to give a urine sample, which the nurse tests to make sure the I don't have an infection (you can't have an instillation when you have an infection). That's the fun of having a disease that mimics the symptoms of a urinary tract infection (among other things): you never know when you have an actual UTI. 

Although I've rarely failed tests in my life, today I certainly did. The good news is that, when you fail a urine test, you get antibiotics instead of an "F". Now I get to go back next week and try again. Isn't that special?

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This cup's for you

It's been a while since I blogged about my achy bladder and fire-breathing urethra. This is partially because, thanks to several medications and a series of procedures, I've been having some good days mixed in with some not-so-good ones (rather than day after day of pretty damn awful). It's nice to not be thinking about my bladder every second. (You probably don't think about yours at all.  What's that like?)

Today I went in for a doctor's visit and instillation (a procedure where they fill my bladder with a drug cocktail). Although I probably should have, I hadn't taken any of the pain medicines that make my pee a frightening, bowl-staining shade of orange or weird blue, so today's urine cup looked like this:




Unfortunately, the stabby, who-jammed-a-straw-up-my-urethra feeling that started out of nowhere after last night's swim was further aggravated by the catheter that delivers the medications during an instillation. So now I've taken two pain pills and I'm counting down for my third. I'm pretty sure that's the definition of irony.

It's still better than it was six months ago. So there's that!

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This is just cruel.

I was in a fancy mall tonight (fancy=all stores too expensive for me to actually shop in) and, of course, I had to go to the bathroom. THIS is the hallway I had to walk down before turning the corner into a lobby area AND THEN turning into the bathroom.  By the time I got back out to the mall, I had to pee again. Plus, I had this whole fight-or-flight thing going on because people get attacked/mugged/stolen in long, creepy, semi-deserted hallways, right?

Anyway, see the guy wayyyyyyy at the beginning of the hallway? (I took this picture on my way out.) That's my husband, possibly dying from boredom. Or reading ESPN.com on his phone. They are pretty much the same anyway. 

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It's a holiday pee cup!

Deck the halls with urine samples

Fa la la la la, la la la la

Fill the cup and make it ample

Fa la la la la, la la la la

Don she now her protective gloves

Fa la la, la la la, la la la

Run the tests and feel the Christmas love

Fa la la la la, la la la la!

I went in for my instillation today, obviously. My nurse made a little squeally noise in excitement while fetching my sample and she told me how much she enjoyed basically getting to handle cups filled with my pee. My work here is done. Until next time.

And now for some Christmas laughs, brought to you by the Muppets. Thanks to my facebook friend Jeanette, who found this gem, which my kids watched about 10 times today while laughing fiendishly. 

Merry Christmas!

What the hell is this cup all about? Click here for more info!

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A cup of... coffee?

Today I had a follow-up visit at the good old urologist's office. I had to use a different kind of urine specimen cup today and there was a disappointing lack of writing space. I drew one of these stupid blobby guys that I've been drawing since junior high school. I usually put a hat on them but this cup had a bumpy section prohibited that so you'll just have to imagine it. It will look better in your imagination than if I drew it anyway.

I have been feeling significantly better. I have even had a few cups of very diluted decaffeinated coffee, which is a nice treat. Caffeine is a big no-no for people having an Interstitial Cystitis problem, but even decaf is considered dangerous because it is acidic. Even MILK is a wild card. Who knew that milk is acidic?

Anyway, the first few cups I made with rice milk and almond milk weren't too great, but I tried my first bit of milk since midsummer in last night's cup and then I was reminded of how much I liked coffee. I'm drinking tons of water and taking Prelief before each day's diluted cup of decaf in hopes that I'll get to keep it in my diet. 

I talked to the nurse practitioner about adding in a multivitamin (vitamins are sometimes triggers for Interstitial Cystitis flares). She recommended trying one while I'm not trying anything else new to see if I can tolerate it (of course). Fortunately, she understood the importance of trying decaf coffee before vitamins. Smart lady.

I spent too much time today trying to figure out when would be the best time to have my one cup of diluted decaf coffee. Yes, I know how pathetic that sounds. I'm not proud. But I *am* enjoying some coffee. 

Oh, and good news for those of you who are fans of the crazy cups: I'm going to be going in for instillations once every six weeks for a while. So although that means I'll be suffering through more catheterizations (ooh, my favorite!), I'll also be writing more weird stuff on cups. All for you. And, you know, for me.

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Burning Down the House

It seems that my uterus has decided to compete with my bladder for the title of “Organ Brenna Hates the Most.”  Lately it gets in an uproar each month and then it tries to involve my already diseased bladder in some sort of a coup. I’m not sure what its eventual goal is (world domination?) but I’m trying to put a lid on the whole damn thing. So on Monday I’m electing to have someone use “radio frequency energy” to burn out my insides. This sounds like a terrific idea, right?

I’m mostly nervous about the whole thing because I’m not the typical patient for this procedure. I don’t have the problem that most people use it to cure (even though this blog is all about TMI, I’ll spare you the details).  I have a separate disease most people have never heard of (Interstitial Cystitis). So I’m a little worried about how this is going to work for me.

It’s only a 90-second-long process. Surely nothing too terrible can happen in that amount of time, right? Except for the part where I’m BURNING OUT MY INSIDES. 

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Pee-Ku Cup

Haiku:

This is my last one.

No more clever cups for you...

I'm sure I'll be back! :)

Thursday was my last instillation, which means that I no longer have to pee in a cup once a week and then have large quantities of odd smelling medicine "instilled" in my bladder in a less-than-pleasant manner. I prefer to keep my urethra catheter-free, thankyouverymuch. 

All-in-all, the instillations were helpful in reducing the pain I feel from Interstital Cystitis, and each one was less painful than the one before, so I'm glad I did it. Do I think I'll never have to do it again? No, I don't. It's a lifelong disease and I'm sure I'll need these treatments again in the future. At least the next time I'll know what I'm in for and I won't be as nervous. And I'm thankful that I'm not one of the IC sufferers who must catheterize her/himself three times a day to do instillations in an attempt to just survive without being in agony. I've been in pretty bad shape myself, but not to that point. I plan on continuing to treat my IC aggressively to stay on top of it. This is not a disease you can let get away from you. Well, actually, it IS a disease that you can let get away from you, but then it snowballs into a disastrous mess that requires physical therapy, drugs, and a lot of agony to get out from under. 

I hope I'm never that person again. I'm paying attention this time.

And now, since this is a humor blog, I give you the Umbilical Brothers, who make me laugh:

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Cup #5/Why Walgreens doesn't suck as much as I thought

"Roses are red

Apples are too

Most urine is yellow

But mine is often BLUE!"

This week's cup credit goes to my aunt, Jan Fender. People were sending me funny things to say but most of them centered on the idea that urine is yellow. But the pain medications I take makes mine varying shades of blue. You'll have to take my word for the fact that this week's sample lived up to this rhyme quite nicely. 

I have one more week of instillations and then I will take a few weeks off before returning to discuss the current state of affairs with my urologist. I've been feeling pretty good as long as I keep taking the pain meds regularly. 

Speaking of pain meds, I owe Walgreens an apology for every evil thought I've sent their way since they starting having all phone calls go through that damn call center. Well, actually, I can still hate on Walgreens for that, but I have mad props for a pharmacy tech named Alicia, who is picking up my old pain pills (Prosed) from another Walgreens on her way home from school tonight. It seems that the meds that work best for me are on back order, so I've been trying Uribel (what a dumb name) and I've discovered that it makes me drowsy and dry-mouthed. I can handle the latter, but not the former. I'm taking three medicines that all have the side effect of making me tired. I don't have time for tired!

So Alicia got on the phone and tried to find out what is going on. It turns out that Prosed won't be available until December 16. But a Walgreens in a neighboring town has some left, and it's somewhat near where she goes to school at night, so she's going to get me some to get me through until the manufacturers get their crap together and make my pills. I'll have them tomorrow, and Alicia will have some chocolate as a thank you because she completely rocks. Which is more than I can say for the crabby pharmacist at the same Walgreens, who couldn't be bothered to help me try to figure out what medicines were more likely to be equivalent and available to begin with. 

Wait, did I just start hating on Walgreens again? Sorry. 

If you have no idea what I'm talking about, read about my bladder disease here. 

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Cup of the Week

On week 4 of my instillations, I didn't have anything really clever to say. Actually, I kind of did... I was going to say "Urine for a treat! I brought donuts. (They are not in this bathroom. You're welcome!)" but my nurse saw me come in with the donuts and she took them and put them in the break room so... PFFT. So here's this week's cup:

It says, "Urine for a treat (donuts) and a trick (you have to deal with my pee). Happy Halloween!"

I'm totally stumped for next week. I can't use any "yellow pee" jokes (I've had several good ones submitted) because most of the time, the medicine makes my urine various shades of blue (which is totally amusing in and of itself, actually). I can't think of any new ways to use "urine" cleverly. I need some serious inspiration for the last two weeks of treatment. Heaven help me if I'm one of those people who needs to do this all the time. I'm just not funny enough for that.

So, help me out here! Give me something to work with! 

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It's that time again.

After taking a week off from my bladder treatments in order to go out of town for work, I returned to the doctor's office today. Therefore, I present my latest urine sample cup, which elicited a laugh-out-loud response from my nurse. I am not sure how I can top this one next week.

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This week's crazy cup

I had something else in mind but this hit me in the car on the way there. You can only use "electric boogaloo" along with the number 2, so I pretty much HAD to use it this week. Next week I'm out of town, and then I'm back doing four more of these fun treatments. Keep sharing your ideas for amusing sayings to put on my urine sample cups!

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And so it begins

Last Thursday, I had my first "installation," during which a thankfully very nice nurse filled my bladder with various medicines to hopefully reduce the pain and other symptoms of Interstitial Cystitis. I'm not usually nervous about medical procedures but I've had a bad experience or two with a catheter so I was really sweating it. Fortunately, it wasn't too bad. I only got tears in my eyes once and levitated off the table twice, so really, it wasn't awful (clearly I have low standards in this regard).

Because I'm me, I like to write clever things or draw pictures on my urine sample cups. Having to come up with six weeks of clever is a bit challenging. Above is cup #1, written rather poorly because my hand was shaking. Suggestions are welcome!

Hopefully next time I'll be a little calmer.

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This ought to be fun!

So tomorrow someone's going to inject my painful bladder full of medicine, which is most likely going to hurt like a son of a bitch, with the idea that eventually I won't have any pain at all. And I'm going to do this at least six times over the coming weeks. This plan is either brilliant or ridiculously stupid. I'll let you know when I figure out which.

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If some stranger has to deal with your pee...

...the least you can do is put a smiley face on the urine sample cup. 

I took this picture for you BEFORE I filled this with pee. You're welcome. 

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This is the nicest public restroom I've ever seen.

And I've seen A LOT of public restrooms. Yesterday while running a few errands for two hours I had to pee in my son's occupational therapist's office (that one's nice too) and the one in Best Buy (where no one seems to know how to flush the toilet). This one in my health food store is for sure the fanciest I've ever found in a retail establishment.

You should have seen me backing out into the store in order to take this picture. Thankfully, no one was around or I would have felt the need to explain. "I really like this bathroom...." Yeah, that's not strange.

Maybe I'll start taking pictures of every public bathroom I visit. I could make a coffee table book of bathrooms and start profiting off my bladder disease. It might work, right?

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If you need to get an incurable disease, I recommend that you choose one that doesn’t involve your excretory or reproductive organs.

I’m naked from the waist down in front of strangers WAY too often these days. Can you conduct a reasonable and pleasant conversation while someone you just met has her fingers all up in your business? I can. I’m freaking GIFTED.

At this point, I’m wearing my nice underwear ALL OF THE TIME because I never know when some doctor, nurse, or therapist is going to ask me to drop trow. Even the Acupuncturist has to get a little personal. At this point, if some random person on the street stopped me and told me to undress from the waist down and put a gown on so it opens in the back, I’d probably do it. And then I’d wonder why people were honking.

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You won't like me when I'm angry

Today at my new physical therapist's office, I had to sign a waiver that explained that a variety of treatments may be used to help reduce the painful flare-ups of Interstitial Cystitis, including vaginal weights. That's right; vaginal weights. It's so awesome to have a bladder disease.

Soon I'll be able to crush you with my strengthened lady parts. You should start running now.

Don't know about Interstitial Cystitis? Read "I fail at peeing"

(This disease sucks giant donkey butt--------->)

I fail at peeing

If you follow this blog, you might remember my in depth discussion of my urinary woes, culminating in a torture session procedure designed to widen my urethra. (If you have a strong constitution, you can read about my experiences here and here.) The hope was that I had an easily (ha!) treatable problem rather than a horrible chronic bladder pain disease. Unfortunately, after further visits with two doctors, the results are in and I am indeed an Interstitial Cystitis* sufferer. If you are keeping track, this means that out of the four people in my immediate family, three of us have rare diseases/afflictions/syndromes (The Girl has a Chiari Malformation and The Boy has Tourette’s Syndrome Plus and is on the autism spectrum). I suspect that Husband should get out now before it’s too late. Except then he’d be leaving me with all this mess and I’d be pretty pissed about that, so I think he’s stuck. Maybe he should wear a surgical mask or something.

At my last urology appointment, I had the pleasure of peeing into a device that measures both urine output and force of flow. Apparently I am mildly retarded in the “force” department, falling one standard deviation below the mean (who knew that there was an average pee force rating?). But then the nurse used a sonogram-type of machine to measure how much urine remained in my bladder after I’m finished peeing. (I retroactively hate every nurse that has ever catheterized me for this same purpose. Bitches, all of you!) The doctor informed me that I retain 120ccs of urine (4 ounces) every time I finish going (that’s half a cup, which seems kind of crazy, right?). I asked him, “How much does a normal person retain?” The doctor replied, “Well, I just did this test on a 92-year-old man and he had 8ccs left.” The doctor seemed to find this very funny. He’s that kind of guy.

So, that’s it. I officially fail at peeing.

I’ve been urination-impaired for years. Long ago when I had a similar test (with a catheter, BITCH), the nurse actually said to me, “Did you finish peeing?” Dumbfounded by this question, I said, “You mean just now when you sent me in the bathroom to pee?” “Yes,” she said irritably. “Did you finish peeing?” Of course I answered “Yes,” but internally I was thinking, “When does anyone EVER not finish peeing on purpose? Who thinks, ‘Wow, I totally love this bathroom, let me make sure that I have to come back her in another ½ hour?’ WHO DOESN’T FINISH PEEING TO THE BEST OF THEIR ABILITY? Did she think I did a bunch of Kegel exercises so I could stop mid-stream and save up some just so she’d feel useful with her instrument of torture catheter? Honestly.”

Whew. I feel better now.

Anyway, my treatment consists of pain medication (currently limited to OTC painkillers and prescription Pyridium, which makes my pee a lovely shade of orange while it apparently damages my production of red blood cells), physical therapy (which will hopefully help in the long run), and a very restricted diet (which I have now restricted even further as I attempt to isolate particular irritants). I’m planning on starting acupuncture soon, which I think automatically ups my “cool” quotient by 50 points. I suspect I may be gluten-intolerant or I have some wonky food problems** (the almond milk I bought to use while I go dairy-free seems to actually be something I can’t handle at all, how’s that for ridiculous?). Right now I’m eating all kinds of unfamiliar foods and I’m still in a lot of pain, but I’ve lost some weight so I guess the whole thing is working out well. Or maybe not. It’s hard to tell.

So far, it’s raining pretty hard on me and my family in 2011. My grandmother died, my mom’s dog died unexpectedly, I’ve been in pain, tired, and out-of-sorts since February, and my son has had his usual drama of tics and attention problems. And that’s just in the health department; that doesn’t count the car repairs and other stressors. But damn it, hand me an umbrella, and I’ll grit my teeth and laugh at the rain.

*What's Interstitial Cystitis? Click here for the Wikipedia entry.

**This reduces my cool points by a bunch, doesn’t it?