Tell it like it is... kind of.

Hello good and faithful readers! I've missed you all! 

It's been a tough few months... Whoo buddy! I guess the highlight, or lowlight as it were (what does it mean when people say as it were? I don't know but it sounds fancy so I'm going with it.)

What was I saying? Oh right. It’s been tough… I found out that since my previous Botox and hydrodistention via cystoscopy in November my bladder developed the dreaded hunners ulcers. (A symptom that only 5-10% of people with IC are cursed with. They’re ulcers that attach to the bladder walls and can bleed or ooze. There’s no treatment or prevention.)  When I had my last Botox procedure about a month ago and my doctor said my bladder looked like a giant sore and covered in hunners ulcers. I've always had a sad, tiny, decrepit looking bladder but it’s a wreck now. I could go into it way more but basically I sort of panicked for a few weeks. I couldn’t accept that after 13 years of having severe IC there was now photo evidence that it was progressing and doing so kind of quickly. So I just didn’t really think about it and when I talked about it I kind of brushed it off.

When I let myself think about it I was terrified. I was more scared than when I woke up from a dream where a flock of seagulls were fighting over the fruit on a Chiquita Banana hat that I happen to be wearing... I just turned 26 about a week ago. What a whipper snapper I am! But I was diagnosed at age 14 so in the last 12 years my bladder has gone from bad to almost as bad as it gets. This bladder has 60 more years to go…

But I can't keep obsessing. It is what it is. I have a wounded bladder.

So now that you're caught up let’s get to the point of today's blog! 

I am consumed with the cyber world of IC. I'm a member of many support groups, I have dozens of Facebook friends who also have it, and from those I have become good friends with a few that I text with daily. It’s so great being surrounded by people who don’t blush at the word urethra, think vaginal suppositories are more normal than Tylenol, and don’t try to tempt me with IC enemy foods.

So when I'm out in "the real world" I kind of forget that most people don't even know about IC! On Saturday my 20 month old son, Titus and I went to get haircuts… It was a particularly stressful event. Titus’ first haircut at a salon, I was getting mine cut too so I couldn’t supervise or soothe him if he got nervous, and then my husband took Titus to walk outside right by a busy street. The hair stylist could obviously sense my stress and said as blunt as some haircuts, “You must be a worrier.” I kind of chuckled, preparing to laugh it off and replied, “we don’t get out much.” Then she went into a whole lecture about how I needed to get out more  and how important it is for kids to see the world, bla bla bla… If you know me you know I’m one of those “nice people” i.e. a sucker. So I just laughed again and said “well I have some health issues so we try to do as much as we can when I’m feeling okay.”

Of course then she felt bad and tried to back pedal. It was all quite comical really. So then it came, the typical, “do you mind if I ask……”

Here we go! The inevitable question. What if I just said, “Actually I do mind.” We all know I would never say that but it would be kind of nice some times. I really don’t mind talking about my IC it’s just hard to know what to say.  I wish it was as known and feared as like, cancer, and then when the topic comes up I could just say… “Oh I have interstitial cystitis” and they say, “Oh you poor dear.” End of conversation. But no. When it comes up I’d like to pull out my collapsible pointing stick and plastic life size bladder display, find a stage and get to work teaching the ways of IC but somehow that seems overboard.

So before I start my demonstration I have to get a sense of how much the person wants to know… Are they just asking to be polite? Or are they like my Aunt Claudia who really cares but is highly squeamish and can hardly stand the word urine, much less pee? Or maybe they’re those know it all types that want to tell you want new potion you just have to buy that will do miracles. Or maybe, just maybe they really want to know because their compassionate people? Or it could be they’re sickos who enjoy hearing about other people’s bladders? Hard to say… So I start out my lesson on IC kind of slow to get a read on my student.

Generally something like, “well I have interstitial cystitis”. 99.7% of the time their blank, innocent little faces just blink at me waiting… so I continue. “It’s a bladder disease.” This is where you can start putting them into categories… if they say something like, “oh that’s too bad” then I consider them in the polite category and the conversation over. But most of the time people want to know more… but do they really?

Do they really want to know all about the inner workings of my botched bladder? So my next step is to usually say, “It’s kind of like having a UTI 24/7.” This is where the common know-it-all’s jump in… “My aunt Judy had a bladder infection that lasted 13 days, have you tried cranberry juice? She drank 84 gallons of that and took some antibiotics and clippity clop she was better in no time!” Sometimes the most ambitious people from this camp jump in when they hear the word cystitis… they think cysts or chronic bladder infections (cys is bladder (like cystoscopy) and itis is related to infection (like bronchitis) but they are wrongo)…  So they’ll say, “Go down to Smitty’s Perscripty, it’s a little all natural supplement store that my neighbor’s grandsons ex boyfriend (scandal I know… can you believe it!? Ethel never saw it coming, he was her favorite baking partner. Who’d have thunk…) Anywho he owns it and they’ll just fix you right up!” I try to kindly correct them or say I’ve tried pretty much everything but a lot of times when people have their tents pitched and their fires made in Camp Know Everything there’s no convincing them. So I say some thing like… “it’s a little different but similar. I’ll have to look into that. Glad Judy is doing well now and um, congrats to Ethel?”

Side note. Cranberry juice is DEATH for us with IC. It’s super acidic and annihilates our tender, scarred bladders. I have no idea why it helps people with UTI’s but it’s the exact opposite for us. I know it’s surprising, we’ve all tried it… trust us. It’s bad.

So then there are people like Rebecca, my hair stylist who seem genuinely intrigued, they want to know the symptoms, the treatments and usually the long term prognosis. Probably seems more dramatic or something. So I give a quick rundown in laymen’s terms, “Basically I have to go a lot, when I gotta go- I gotta go, I have accidents, and mainly lots of pain. It’s like my bladder is kind of allergic to my urine. I get Botox every 4 months and I have two devices that work with my nerves. I’ve tried lots of things but there are a few other things out there left to try so I’m sure it will all work out!”

It is so hard! I ALWAYS end it with a jaunty positive note that almost seems to erase everything I had said before that… I don’t know why. I guess I don’t want sympathy or for them to feel like I’m searching for sympathy. So I lay it out there then I put it back in a box with a pretty bow so they don’t have to worry.

I wonder if people think I’m dealing with a little tingle in my bladder because I down play it but I feel like if I paint a picture of the reality of IC they’ll think I have to be exaggerating. It’s not terminal so how bad could it be? Right? Wrong. I don’t know. Maybe they won’t think that… Sitting here typing this I do not know why I do it. But I do. Every time.

So after I kind of minimized it the girl making me look like Meg Ryan Circa 1998 in “You’ve Got Mail” as per requested lost interest and moved on. 

My Meg Ryan inspired new do!

Then, of course, I started thinking. I need a new way of things. It seems a tad extreme to carry a brochure with pictures of my desecrated bladder, carefully written descriptions and links to learn more but I hate being dismissed, even if I am basically giving them permission to dismiss me. I know it doesn’t even matter what Rebecca the Enumclaw hair dresser thinks about me or random people I meet at parties (because you all know how much I party! HA! When I wrote that I meant like baby showers but then I read it and laughed because it sounds like I meant at a kegger and I wouldn’t know what a keg looked like unless it truly looks like the ones on Beauty and the Beast that Gaston drinks from?)

Well then I started thinking about when I talk about my IC with my loved ones… Guess what I realized. I do the same thing. Not only do I have IC but I also have a new disease where I cannot end a conversation about my health without diminishing it. I guess I don’t want other people to take on the weight of my IC and I want to be seen as strong and totally positive about my deteriorating bladder. Weird. So then I wondered what do people get from what I say when I explain my IC. Do they get the severity and the pain? The lengths I go to alleviate the symptoms? The impact it has had on my life for the last 12 years? So I asked my Facebook friends who are made up of family and friends both old and new. Well. Turns out even when I feel like I’m making a jumbled mess out of the description of IC I am getting the message across. They all pretty much knew the general idea of IC (except for my Dad who guessed Interstitial Cystitis was when a sister dislikes living out of the country… Don’t mind him.) Which means even when I finish a 5 minute dissertation on IC with a “But it’s ok! We all have our challenges!” They don’t write off everything I had said up until that point. So I guess I’ll keep doing what I’m doing. Surveying the listener and giving the correct response that corresponds with that person’s camp. I will try to be honest and not dismissive about my own pain.

I’m not saying it’s not totally, super awesome to be positive and encouraging about this dreadful disease. I guess I just want people to know the severity and reality of the beast… and I want to tell them in a springy, upbeat positive way without discounting everything I just said. IS THAT SO HARD?!?!? Apparently.

So how do you guys with IC explain it to strangers? Or do you tell them to mind your own bees wax and to take a hike?!? HA!

Until next time dearest dears!

Oh wait, one more thing! I saw this on Pinterest the other day and I laughed for way too long... my husband and sister just cracked a smile but I thought it was hilarious! So I thought I would share!