A Tale of IC

So, awhile ago, I wrote about my jerk faced bladder. After all kinds of horrific bladder-related tests, including the one where they put me under general anesthetic to fill up my bladder like a big festive balloon until it cracked, I was diagnosed with Interstitial Cystitis.

Interstitial Cystitis or IC, is basically punishment from Satan in the form of the feelings of a UTI (urinary tract infection) because your bladder lining is faulty, with none of the therapeutic possibilities of things like antibiotics or cranberry juice.  In fact, cranberry juice is one of the things that makes it worse.

When I first started feeling the effects of IC, I was guzzling cranberry juice like a person desperate not to have yet another UTI, which only made my bladder angrier and angrier.

And then, like a misunderstood teenager, it began to self-injure

Once I figured out that I probably had IC, two years before it was finally diagnosed, I immediately started an IC diet to try to appease the angsty beast that was living in my groin, and it worked pretty okay, though it was (and is) inconvenient.

Basically nothing with acid, sourness, caffeine or deliciousness.

But, I also found that certain medicines that I had been prescribed for other issues also tore the hell out of my bladder. At 4:45 on a Friday about a year ago, I found myself on the phone, pleading with my urologist's office to give me something to stop the bladder pain before I found a bridge to jump off during the weekend.

What I got worked well enough that I did not have to go out searching for appropriately tall bridges. It is a handy dandy pill that I dissolve under my tongue made from the root of the mandrake. Mandrake or mandragora, if you remember from Harry Potter, is a powerful restorative.  It is used to return people who have been transfigured or cursed, to their original state.

 Actually, wait, no, it is an antispasmodic drug that soothes the muscles, so, I guess it would work to unpetrify someone who had been petrified by a basilisk (spoilers, sorry), as well as someone who has ridiculous cramps in their bladder that makes them feel like they have to pee every 2 seconds.

I was also introduced to the "Bladder Cocktail" which is likely not as fancy as it sounds at all.

Basically, it is the most wonderful thing ever invented, surely sent from any god that might exist who doesn't like punishing people for having a bladder. It's a mixture of lidocaine and heparin that coats your bladder and numbs the crap out of your bladder wall.

Now, you are likely wondering, like I was when this was first described to me... so... you just pee on yourself? Somehow, this magical concoction from heaven doesn't affect your ability to feel a full bladder, it just stops all the pain associated with having pee in your bladder, which is part of the actual problem with Interstitial Cystitis.

Now, there is a drug to coat your bladder with magic that is on the market called Elmiron, and it works pretty nicely, but it does have side effects.  In my case, along with a bunch of other drugs, it beat the hell out of my liver and I ended up in the ER thinking I was dying of liver failure where I was advised to maybe stop taking pills that were killing my liver. It also beats up your stomach really badly because it is housed in a capsule made of pure evil, but switching it into a generic gelatin pill capsule is enough to combat that... but not if your liver isn't working.

So... I have a crappy bladder disease, and I am managing it with mandrake pills and emergency bladder cocktails when the disease flares beyond what I can control with diet, because I can't handle the pill that would make my life normal, which is part of why I decided to write this post; because right this very moment, my disease is flaring and my mandrake doesn't seem to be working so I called my doctor's office for my "you can come in any time, immediately, no problem, emergency bladder cocktail" and immediately, in this case, translates to "in 11 days." ELEVEN DAYS!!!!

So, I figured you should know what happened, just in case I can't find relief and need to find a suitably tall bridge before I can make it to next Thursday.

That Unfunny, Un-illustrated, TMI Post.

So, I have this medical procedure on Thursday morning that I have been waiting for for 4 months now, and I've hinted at it, but I haven't really written about it, mostly because I don't feel like illustrating it, and also because it is not terribly funny.

My bladder and its bad behavior has been a subject of this blarg before, and I have been waiting all this time for an appointment to have it looked at to make sure that the bad thing it is doing is not cancer.  This is honestly the first time that doctors have ever actually said to me, without my input, "Well, it could well be cancer. We're checking for bladder cancer."

(I'm going into details here so you might want to just skip to the bottom if you get squeamish...)

I am guessing it isn't. My hunch is that I have another chronic disease and that it isn't life threatening and will just be a painful annoyance for the rest of my life. Better, but not by a huge margin.

But they want to do more than just looking inside my bladder.  When I went to my first appointment with the urologist, the very nice nurse was tasked with catheterizing me to get an unadulterated sample of my pee to test it, once again, to make sure the problem wasn't an infection. She very kindly told me everything that she was doing before she even touched me.

She calmly let me know. "I'm inserting the catheter now. I'm not going to hurt you."
To which I laughed and replied "I think you're a damned liar!" because she was a damned liar and she scraped half the length of my urethra with the catheter. I peed a lot of blood for the rest of the day. It was like paying someone to give me the worst UTI of my life.
She was still a lovely person though. Then she exclaimed, "Your urethra is TINY! The doctor will dilate that for you when he does the cystoscope."
And I said, "Okay" because I didn't have access to the internet while I was in the office to find out exactly what "Urethral Dilation" entails.

Remember how freaked out I was at having my eyeballs touched?  Yeah, I am at least 600% less pleased about having graduated tubes inserted into my pee hole to make it bigger.  I figure it is just fine how it is.  She said it would help me pee better, but I think I have been peeing in an efficient and frequent manner for almost 36 years and I am of the opinion that they should leave well enough alone.

Also, everything I have read says that patients are usually put out for cystoscopes, yet, my doctor plans on doing it while I am completely awake and aware, and seeing as my guts betray me when I am nervous, and I have fibromyalgia, so my nerves are like super mega-ly more sensitive to pain than other people's, I am afraid that there is a chance that I am going to poop on the doctor. I would be afraid of kicking someone too, to stop the pain, because I am a kicker, but I have seen the table they are going to do the procedure on, and it has straps to immobilize my legs, which means they KNOW that I am going to want to kick them in the faces.

And I assume (but don't know if) they are going to somehow anesthetize the parts of my pee system that they will be futzing with, but OMG, what if they need to do biopsies!? I just want them to put me to sleep for this.

And then there is the bladder stretching, which might be on the docket also, because they made me measure my urinary habits with a pilgrim's hat, and it seems the most my bladder holds is 8-10 ounces, where the normal person's bladder holds double that. And I read that they sometimes do that to treat overactive bladder stuff... and I also read that some people who have had urethral dilation, and bladder stretching are in pain for the rest of their lives.

Anyway, I am not entirely sure what will happen to my bladder, and not knowing things I want to know stresses me out. Not knowing, for 4 months, whether the bleeding in my bladder is cancer has made me much less jovial and desirous of writing and illustrating. Though they keep trying to reschedule on me (it has been moved twice now- they tried to cancel again today, but agreed to just do it an hour and a half earlier- and I had to wait two months for my first visit knowing that my general practitioner wanted me seen right away, also concerned about cancer) I am hoping there will be some sort of KNOWN by the end of this week, and I can stop worrying all the time and go back to seeing funny things everywhere, all the time.

In all, this has been going on for almost a year, if not longer. I'm scared, and I'm nervous, and I don't want to endure more pain. I want my normal life back. I don't want to worry about this any more, so no matter how scared I am, I need to go through with it and get it over with so I can have an answer and start treating my stupid jerk bladder. But I am not looking forward to it, and it sucks, and I want to magically be better so I can go back to just being funny.


P.S. I want kittens and hamsters and goats to hug. I think that would make me feel better. Please send a petting zoo immediately.

Are You Experienced?

One of the crappiest things people can do, in my opinion, is insisting, when someone reports their personal experience, that said person with experience is clearly stupid/crazy/lying/in denial and is unaware of what is going on in their own life.

This applies to all sorts of experiences,
Like fat people who are told:

or writers of blargs who are told:
JUST STOP BEING DEPRESSED! YOU WON'T HURT IF YOU JUST GET OVER YOUR LIFE CRUSHING DEPRESSION!
Yeah. Not depressed.
DEPRESSION MANIFESTS IN COUNTLESS WAYS!
Does it ever manifest in being happy and content with your life, and being really motivated, because then maybe, yes, I am terribly depressed, but otherwise, NO, I AM NOT AND I AM GOING TO SHOVE A WAREHOUSE FULL OF TWINKIES UP YOUR BUTT IF YOU DON'T STOP TELLING ME I AM!

If someone is trying to tell you that your account of your own experience is wrong, or tries to assign feelings to you without really listening to you or even asking you how you feel, chances are, they are either trying to manipulate you, or they are an asshole.

After having been diagnosed with Fibromyalgia last week, I was sent to see a therapist yesterday to treat my "depression caused" Fibromyalgia. I willingly submitted to testing and answered questions on a little digital box to measure my sanity:

Er, does that count having to wake up to pee 10 times a night?
No. You have a reason for that, it means if you don't have a valid reason.
Okay, then no.

What? I don't abuse drugs at all! What the hell kind of question is this!? I don't think you can abuse a substance less than not doing them at all, unless I started doing nice things for drugs, like making them fancy dream houses with a working elevator or something?

False?

What's going on here? I mean they haven't in a while.

 Well, I guess true, now...


And after about 10 minutes, I had read and answered all of the questions to the best of my ability, since it asked many loaded questions along the line of "Have you stopped beating your wife? Y/N" What!? Wait! I don't even have a wife. Crap. This test should have been written by someone with a background in ambiguities.

And then the very lovely man who was assigned to talk to me plugged the test box into the the computer and a piece of paper issued from his printer with my results and after reviewing them, he said "As I am sure you are well aware, there is not a damned thing wrong with you psychologically." Which is what I have been saying to my doctors all along.

To My Doctor...

So... okay, my colonoscopy was awful, and it was an anomaly*, I know, because I have a super liver (still) that filters medications out of my body at high speeds, so uh, I may have traumatized some people.

They also might not have taken me completely seriously when I told them that I ALWAYS wake up during the procedure. So, I woke up during the procedure...

And I feel it necessary, now, to make this card for my doctor because I am going to have to continue to see him, and I am fairly embarrassed that in my semi-unconscious state I couldn't stop myself my screaming like a crazed weasel and crying hysterically, like someone had just been cutting chunks out of my intestines while filling them full of air.

All I really know about my doctor is that he REALLY likes working out. And he seems not to be a serial killer, so I can safely assume that he likes kittens and rainbows and unicorns and mini Godzilla.

So, yeah. Sorry 'bout that.



*Please don't let this scare you off from getting life-saving diagnostic tests. Most people don't have this problem, and a few minutes of screaming while they run off to get you more meds is worth making sure your guts are okay, believe me. This is my fifth and it won't be my last, no matter how many times it traumatizes me.

Sponsor my Pooping!

I have a colonoscopy scheduled for next Thursday. My doctor keeps on harping at me, "blah blah, have a colonoscopy, colon cancer risk, blah blah blah." And I have no problem with HAVING a colonoscopy; they put you to sleep for it and give you drugs that make you mostly forget the procedure (though I have a knack of waking up during it each time until they realize I am awake and pump more drugs into me)... the problem is the prep.  If they could somehow give me amnesia through the whole prep leading up to the procedure, I would have those things any damned time they asked me to.

If you are not familiar with colonoscopies, after they install an IV drip to flood you with drugs of joy, a doctor takes a flexible tube with a camera type device on it and sticks it up your poop chute, looking for any signs of scarring, or cancer, or bleeding, or polyps, or wormholes that make you poop out of your own mouth. But to do that, they have to remove all the everything that usually hangs out in one's intestines so they can get a clear view of the intestine walls, and to do THAT, they make you drink a bunch of gnarly tasting junk that turns your butt into Old Faithful.. for 20 hours.

During my last colonoscopy, 4 years ago, they apparently replaced the regular nursing staff with some Medieval Inquisitionist who clearly thought I was harboring some serious secrets, because she was more than happy to torture me by refusing to let me get up to go to the bathroom. "Just go on the table." I don't WANT to go on the table!! They break prisoners by making them violate potty training! JUST LET ME GO! But nope, she apparently wanted to scar me for life, which she has done, which is part of why, though I am supposed to have a colonoscopy every year, I have avoided doing so.

When I took my mom in for a colonoscopy last year and they told her to just let them know when she needed to go again so they could help her up, I yelped out "WHAT THE HELL!?" and told my tale of Nurse Torment.  "Here?!" the nurse asked incredulously. "That is NOT our policy! I don't know why that happened to you." Uh, because I have to write a blarg somehow and if things were always boring and sane around me, I'd have to ACTUALLY be entertaining, instead of just telling what happens to me or laying in fetal position rocking back and forth.

But as usual, there is more to it than just doing the prep and having this test done. The prep meds cost about 4 times my budget for buying things in a week. The colonoscopy, itself, is totally covered by the hospital now, but the Old Faithful intestinal cleanser, nope... they won't pay for it, so I have to find a way to make it so.

I have toyed with the idea of having sponsored pooping. For a minimum of ten dollars, I could announce on Twitter and/or Facebook

with the inclusion of a link and logo or quick drawing from me. For more than 10 dollars, they could actually make up their own tagline, instead of leaving it to me.  Then I would send the sponsors a card and an I HELP FIGHT COLON CANCER sticker with a brown ribbon, of course*, to thank them for their support, or something along those lines. There is 20 hours of prep, but I wouldn't need that many sponsors to cover the cost, and any extra could go to buy me a solid lunch after the procedure. Genius, no?

I also thought we could have a betting pool to guess how many polyps I have this time.


Regardless, I shall be live tweeting my colonoscopy prep on the 28th of March. It should be a rocking good time. And I promise not to post any pictures of toilets or things that have come out of my butt. I might describe some of it though... but with a sense of humor, always a sense of humor.


*no, really, that is the ribbon color for colon cancer, because someone has quite a sense of humor, and laughter is still the best medicine.

Congress

So good news, I'm NORMAL! (says the doctor I saw today) Only not really, at all. I just was so awesome before that my normal is like slug for other people and until I get money to see someone else or become a total invalid, I can suck it.

Actually, they say I am depressed, and I think if they say that just a few more times, I may actually become depressed (which might be their goal), or I might start lighting things on fire randomly while shouting gibberish and eating good and plentys, which should tell you how much I dislike being told that I am depressed when I am not motherfucking depressed.

Now stressed? I am stressed. I wish they would give me a prescription to deal with said overwhelming stress as it would entail a large never-depleting bank account, a personal masseuse, a bacon butler ™, and lots of ME time.

The problem I see.

So, I went to the eye doctor (aka eye touching motherfuckers). It was the first time I've been to an actual eye doctor since 1983. They did all their tests, which are much less traumatizing now than they were in 1983, and my vision seemed completely normal, perfect, in fact.
For perhaps a year, I have been complaining that I FEEL like my vision in my right eye is shrouded, but it isn't. I understand that doesn't make sense, but when I look out of each eye separately, each eye is perfectly normal, but with both eyes open, it feels like my left eye sees clearer than my right.
So after doing all of the tests, I told the doctor exactly that, and he said "OH! Let me do one more test!"
And then he gave me lenses so I could see, because apparently dilating the hell out of your eyes makes them not focus. And as an aside, I don't understand how anyone who has perfect vision who then develops severe far sidedness doesn't immediately jump off a bridge. I was close and I only had to put up with it for 6 hours.
Anyway, he had me hold lenses in front of my eyes so I could see anything that wasn't 40 feet away, and had me cover my left eye and then my right and this is what I saw:

The left side is the left eye and the right, is the right... funny how that works.

This is called a "Red Cap Desaturation Test" by the way.

He explained to me that the difference in my ability to see colors now is not a problem with my physical eye but is a neurological problem. He didn't give me an actual diagnosis but sent the report to my doctors (who I have demanded take all this stuff seriously). I go to the neurologist on Thursday, so I should have more information for us all then, though Dr. Google has already given me a sound diagnosis that does not surprise me at all.




Also, remember, today is the last day to sign up to give a stranger an AWESOME VD*! Sign up for da Cheeseblarg's Secret Cupid Exchange before midnight.

No actual venereal diseases should be sent, VD is meant to refer to Valentines Day, because VD is a Special Trading Day!

MY EYEBALLS!!!!!

Oh yeah, because I am going blind from all the floaters in my eyes, and the flashy things. 

I'm still not okay with it.

If they blind me with their eye touching machine, I am going to be angry.

And my drawings will probably not be as pretty as they are now.

Another time I thought I had cancer.

I learned yesterday that I don't like having needles stuck into my face.  I had an inkling before that it was the sort of thing that I would not be in to, but having it done totally cemented in my mind that I REALLY don't like it. I probably like it more than the prospect of having cancer though, which is why I allowed my doctor to put a needle into my face.  If he had just been like, "You know what would be fun? Stabbing you in the face with a needle!" and then he'd come at me all:

 I would have had to use my Hamster Style on him.

But why was a doctor sticking a needle into your face, JRose?

Funny you should ask.

On Friday, my face went all Volcano-mode and the mole by my nose did a dramatic recreation of the movie 2012.

I thought, eh, pimple, whatevs, because I like to talk to myself like I am cool and hep, as the kids say. I kept screwing with it 'til it popped because if I have a giant "end of the world" sort of face sore, I cannot do anything but poke and prod until it goes away or I pass out from pain.
I am not sure what it was, I don't think it was actually a pimple, but it had its sights on my signature mole which is now gone completely because it fell off.  PART OF MY FACE FELL OFF! One of my favorite parts of my face, too. I mean, I would miss my eyelids more, but I really liked that damned mole.

Of course, by "fell off" I mean I kept messing with the little flappy part that was threatening to fall off until it ripped off, but the results are the same, a bloody gross face hole that I was pretty sure was the deadliest kind of cancer, because I always think everything is the worst thing it could ever be... and obviously, my inane expectation that I'm going to die eminently led me to the doctor's office where I allowed him to inject shots into my face to do a biopsy because while it probably isn't cancer, he says, it would super suck to be wrong.

And now I feel sorry for strangers who have to look at my post-biopsy face because I am sure they must feel uncomfortable looking at me. It kind of looks like someone put a cigarette out on my face, which should totally be my story if anyone breaks social code and asks why I am so horribly disfigured.

Stick it!

When I went to the doctor's office last Wednesday, the nurse I saw suggested that acupuncture might be the cure to my ridiculous intestinal ailments.  I fail to see how sticking needles into me will make me not allergic to things, but other than the whole, sticking needles into me, what could it hurt? Surely it wouldn't make my food intolerances worse.

After talking to the acupuncturist, my worries were allayed that the cure would surely have something to do with stabbing needles into my eyes, because of course, to me, something is not really valuable and useful unless it is the most unpleasant scenario you can possibly imagine. Yes, so no needles to the eyes, no needles to the pee hole, just a bunch of holding things I am currently allergic to while she stabs needles into my back to teach my body that freaking out at food and medicines is not acceptable and will be punished with repeated stabbing. That should do it, right?

Unfortunately, the treatment would cost over 900 dollars and though she SAYS that I would have no allergies when she was done, and I could eat bread again until it grew out of my ears, I don't think she is willing to guarantee that.  There is also the problem that I do not have 900 dollars nor the prospect of having that much money that I will ever be able to spend on something that may or may not work, that also requires me to be stabbed repeatedly.  If I had that much to spare, I would do it. But I'm an industrious and frugal kind of gal, maybe I could just do it myself.  I'm sure we have a box of straight pins in the sewing room somewhere.

Use our MRI or DIE!

I went today for an MRI on my brain to prove, once and for all, that I do not have either tumors, or a woodsman in my brain causing my headaches.

When I met my technician I didn't catch his name, but let's call him Chip, he looked like a Chip. I told him, as we walked to the MRI room, "I'm gonna try not to freak out, but I cannot promise anything." Chip assured me that he would do his best to hurry and was super nice about explaining to me what would happen, though I knew because I can't go into a situation without researching it thoroughly, especially when it might tell me I have a woodsman in my head. Plus, I watch a lot of House. I was then told I could listen to music while they did the procedure. I, of course, chose the 80s music channel and Chip offered to turn the music way up so it would drown out the sound of the machine. Thanks for the thought Chip; it totally didn't work.

And then, and I had considered this, it played a song by Van Halen that my stupid idiot jerk boyfriend from high school used to cry through because "It was SO meaningful and deep." No, idiot, "When It's Love" is not deep, you're just a tool. Plus, seriously, Sammy Hagar sucks, I mean compared to David Lee Roth... He was alright on his own, but Van Halen totally fell apart when they replaced David Lee Roth. I wish they had played Panama, or Ice Cream Man, or anything that didn't remind me that I dated a stupid jerk for way too long, but it was amusing, being stuck in a tube with sub-par Van Halen and my memories.
Then they played "Centerfold" by the J. Geils Band which I loved, clearly, because if you don't love that song, you suck*, or haven't heard it. And then "Tenderness" by... who the heck sings that song... General Public? Who knew... probably people who really like General Public.

Part way through "When It's Love," Chip called into me to make sure I was okay and then told me there were only 6 minutes left. He didn't, however, tell me that those were the six loudest, most terrifying minutes of the procedure. Towards the end, the machine started shaking and beeping like there was a nuclear melt down happening. It crossed my mind that the Yellowstone Caldera had finally blown and that Chip had fled for his life and I was going to die wedged in a tiny tube.

But, I have already gotten the results back and my brain is, apparently, completely normal. I think that their definition of "normal" may be a bit skewed but my headaches are just headaches and I can finally say for sure:



IT'S NOT A TUMOR!


*sorry for telling you you suck if you hate this song. I've just been through something traumatic, you'll have to forgive me.

I'll let you know if I have super strength tomorrow...

I went to the doctor today because I put on my shoe and then my toe hurt, and then, when I took off my shoe, there was a big red unhappy bump on it with two little holes (that apparently only I can see), and my toe was swollen.
I showed the doctor and he tried to convince me it was just a tiny thorn that had attacked my foot and NOT a giant black widow and that I most likely would not be losing the toe.
"If it was a black widow bite, it would get a big red unhappy bump, and your toe would swell, and it would feel tingly, or numb, or weird," he said to reassure me.
"But it does feel tingly, and numb, and weird!" I exclaimed, which he totally ignored.

So my prognosis is (paraphrasing) "*shrug* Soak it to draw out 'whatever is in there' and come back if gross stuff starts coming out of it."
I know he was talking about pus but all I can think of is the urban legends concerning baby spiders.

p.s. It would probably help you to know that there are actually black widows in my house. So it is not just me being completely neurotic, only partially.