From Me and Mine to You and Urine!

I have to be all stealthy today in writing a post as I’ve been quite busy at work  but don’t want to neglect my little blah blah blog!

Let’s talk about Pee pee!  I cringe every time I think about my bladder…  Oh those days when my Urethra Franklin is singing the blues!  I’m talking Interstitial Cystitis!  How Ironic is it that I’ve been bladder pain free for two years and as soon as I mention it to my Rheumy, it rears it’s ugly…well… it starts acting up!

I get the trickles.  Those of you in the know- know what I mean!  Can’t sneeze or cough without crossing your legs?!  that sort of thing!  Or the two second warning that comes and lets you know- hey!  you have to pee…..RIGHT NOW!!!!  now!!!! RUN!!!!

I’m not sexually active (it’s my choice…really….no…. really… it’s my choice. honest!) and this has cut down on the bladder and pee shoot pain significantly- so I’m not sure why It’s spasming now.  I even wondered if it was kidneys stone.  Whatever it is- it’s   about as much fun as tractor full of chickens crashing on the highway.

I mentioned my rheumy-  she’s new to me.  I can’t decide if i like her fully- but I know i like her better than the previous one I tried out-  Well anyway, she told me that interstitial cystitis wasn’t a Lupus or Sjogrens thing- but a Fibro thing.  Ok…well, i have all of those- does it matter?  it’s beside the point and in spite of the point.

So, I’m trying to be good and drink lots of water (bleck!), taking those lovely little pills that turn your pee orange  ad avoiding caffeine (kind of), sweets, (kid of) and other triggers.  What’s the point of that tho- really!!!  When I’m miserable, caffeine keeps me going and I deserve sugary sweets for having to put up with this! ding dang it!  But seriously, I’m trying to be good.  It’s slowly easing up.

You know- the comedy of all of this just really strikes me.  It’s almost like there is a grand big Being that is overlooking us and laughing- ha ha ha!  look at that little red headed one!  She has Lupus-  let’s give her Sjogren’s and then add some Meniere’s!  Watch this-  we’ll weaken her bladder and cramp it up  and watch her stry to dizzily hobble run to the bathroom!  $5 bucks says she’ll piddle in her panties!

I know this whole bladder and pee hole thing is kid of a mystery- but dang if it doesn’t knock the pi$$ out of you!  ha!

But I don’t want to give up the stuff I love…or the stuff I need!

I’ve been thinking about this whole blog thing… hobbling to the train this morning… sitting at my desk… Thinking about the topic I want to write but also wanting to address something.  I’m thinking to the average person stumbling upon these words, they may seem the demented ramblings of spoiled brat.  Perhaps they are.  Jeezy! When did it become not cool to be human?

You know,  when folks first read the Spoon Theory (I’ll hold off on my opinion, for good and bad, of this theory and save it for another post), they really related to it.  I happen to think that anger,  fear and frustration are relatable too.  We all want to be strong and positive…but ding dang it,  this blog is about letting go of that.  So- feel free to add your vents to mine!

Ok- now… on to the official blog post. Ha!

I’ve been really really lucky in the grand scheme of these diseases.  It’s just been in the last year that I’m really being wreaked.  I spend a lot of time thinking (alone, as per my previous post) about what’s gotta get pared down in this life.  I work In a music-based job, I play in a band, I do freelance work for extra money (which isn’t even extra if you think about it since there is never enough!),  I’m still an active parent for one kid away in school and another that is quite comfortable at home.  I try to get out with girlfriends (forget about boyfriends!) as often as I can… and all of this together is becoming too much.  What’s to go?   The money-based things can’t go,  the kids still need me,  I need my friends and the band thing…well,  it’s something that I enjoy.  A much needed creative outlet.

Not to mention (but oh!  I shall)  the things I can’t even get to that I can’t afford because of the mountains of money spent on specialist and tests and therapies.  New special ukulele for me?  Yes, please!  Ooops,  sorry- instead of a well deserved treat,  you get an electrocochleogram!  Yaaaaay!!!!!   Hmmmm…No…not so much.

It’s the pits because the reality of it is, I can’t do it all and in addition to the things I get to deprive myself of regularly,  I have to find a way to chisel down everything else I my life.

So, here I am- a spoiled 42 year old brat stomping my foot like a two year old because I don’t want to give up one aspect of my life- not even for a little while.