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!

Smashing my feet with a hammer!

I’m thinking I may need to pace (not a “foot” based pun as the title may lead you to believe) myself.  Although I find the whole venting thing very therapeutic, others may find it a tad…just a smidgen, mind you- NEGATIVE.  So I’ll go ahead and tackle the myth now-  I’m actually a pretty positive and optimistic person…and when I’m not- I fake it so darn well!  So in true Chronic Guerrilla form, I’ll continue to be as awesomely honest and open and angry about this stuff as I want…but you folks can rest assured, I’m a kitten underneath all of this.  Shhhhh…don’t tell anyone.

Where was I?  Oh!  Hammer to the feet!  This is one of the things I think about when I walk.  I recently sold my car.  I couldn’t afford to keep two cars and the other vehicle belonging to my daughter was given to her…so, I couldn’t sell it.  Our area has public transportation and it just seemed like an ok thing to do. I used to love to walk- even in recent years.  I’ve never been very good at running because of knee pain but I could get my walk on fairly well  I foresaw no issue with being car-less. 

The train station nearest to my house is .7 miles away.  Then my office is .3 mile from my last stop to work.  Awesome!  1 mile each way! I was excited about the prospect of getting out there-  improving my balance, getting my endorphins going and getting in a little better shape (yeah, the physique has slipped a bit in the last couple of years…so?).  My rhuemy ok’d it and I was ready! It has been three weeks.  The pain is excruciating! AND  not improving!  As I walk, or shall I say-hobble, I have begun to think of what I like to call the Hammer Theory.  Tho really- it isn’t theory so much as a ranting, obsessive, pain steeped thought.  Endorphins my A$$!  Each day, the pain is so bad from the knees down that I imagine that it must be causing some sort of permanent damage.  Each day is like another blow to the dogs with a hammer….and they are a barking!  YELPING!  Usually, I need to run across the street right next to the train stop and I’m certain I look like some Golem type creature crouching and hobble-trotting the crosswalk because, also, by this time drop foot (or what I like to call flipper feet) has “kicked in”!  Thankfully, the 15 minute ride affords me the opportunity to rest up enough to make the last .3 mile to my office in a somewhat upright position.  Finally…panting, I plop into my chair.  Dizzy from the noises and traffic motions  and the effort of remaining erect and mobile, I settle enough for the tingle burn to set in.  Ah yes! the proverbial hammer to foot.  Yes..Yes.. as I sit, allowing my eyes to and ears to adjust to the lack of body motion, my feet slowly began to burn, tingle and itch like a poled and fired witch in Salem! 

Well, luckily, there are many tasks to do sitting down in radio land and my feet slowly stop tingling and burning.  The ache never goes away but the fiery itch does subside….in just enough time for me to do it again…in reverse!  DANG!

I’m wondering if this is what the magical land of Peripheral Neuropathy.  Oh but Golly-  I’m not quite ready to go down that road of testing yet.  I’m still in the middle of the Meniere’s stuff. Yes!  next week we get to celebrate Electrode Sponge Ear Day so we’ll put off whatever modern forms of overpriced torture the neurologist (tho she is quite an awesome lady- I almost don’t mind giving her my money…almost) would want to inflict.  Yes dearies, today is indeed about pacing one’s self (this time the pun was intended!)

Oh Golly!  Look at the time!  Time to hobble on home! 

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.

What to do about family?

Ahhh…family.  This is the topic that initially inspired this blog.  I love my family.  I really and truly do….BUT… they aren’t quite what one would call a supportive network.  I was diagnosed with Lupus at the age of 15.  My entire family was devastated.  Mainly, I think, because they didn’t know what it was.  I took it in stride.  I did such a great job playing the strong tough chick that my family bought my act.  Now, several diseases later, they are nowhere to be found.  They have each maybe gone to one or two big appointments with me.

The thing is, now, in my 40’s as a hardworking single mom of two almost grown kids, it’s getting harder…not easier.  Last fall I began unraveling physically.  The flares were getting unbearable and I bit the bullet and decided to get a real team of doctors.  Neury, Rheumy, Opthy, and Otolaryng….oh! no cute name for him.  But, needless to say this has been a rough few months of many many tests and the recent diagnosis of Meniere’s-   Sure!  What’s one more disease.

I really could use someone to talk about this stuff with.  I have my friends and they listen, but I mean a family member.  Someone to help me make a plan.  Someone that will … shoot… do what I seem to think a family would do….what I would do for them.  It would seem that they like to come visit for fun things.  Party’s, shows (I’m in a kick ass band…that is also getting more and more difficult to maintain), and the cool things.  Which means, inevitably, more work-  cleaning my atrociously messy apartment, shopping and entertaining.  Could they come to help me clean?  Could they come to hold my hand when I’m to go get injections in my ears…or at least to give me the courage to go for the injections in the first place?!?! (that’s going to be a whole other blog).  What about someone to drive after I’ve had my pupils dilated (i ended up driving into a row of hedges) or have been spun around blind in a dark booth?  hullo? cricket cricket cricket.

I get it.  They have lives of their own and….oh…I am so strong!  I can most certainly handle it.  I’ve gotten this far!  But you know what?  I can’t.  I really can’t.

I don’t want to burden my friends.   And really, they would need to be REALLY good friends to go and wait for me to pee standing up, catheterized while being x-rayed. ha!  And seriously, These diseases freak people the F out!  I have some wonderful friends who have offered to be my ride…but…I want my Mom.  I want my Big sister…heck- even my big brother.  cricket cricket cricket.

I guess I just have this idea of someone being there.  Someone just saying- “hey, it’s ok.  I know you’re mad and scared…but we’ve got this.”  cricket cricket cricket.

I’m angry at them, then I feel guilty for being mad.  Then I get mad at the illnesses.  I cry, feel sorry for myself and then put my big girl pants back on and go back to living up to the illusion that “I’ve got this-yo!”  I do.  I amaze myself at my ability to keep on keeping on- even when I think I can’t.  In spite of and because of my family.

 

So here we go…

I’m a trooper.  Having been diagnosed with my first autoimmune disease over 20 years ago, I’ve sort of learned to live with my diseases.  Something that has become more and more difficult as I’ve gotten older.  I get angry…and you know what?  It’s perfectly ok.  So, I figured there are others out there who get angry and sure- we all want to be comforted but isn’t there also comfort in knowing that you aren’t the only one pissed off for being sick?!  Pissed at your doctors, your families, yourself and life in general.  It happens and I believe anger is a natural and valid emotion under such circumstances.  We all want to be rosy and optimistic- strong for the loved ones in our lives, but you know what?  Sometimes you have to be real and allow yourself the luxury of getting butt hurt crazy mad.

I am a professional adult female in my 40’s.  I have friends, a healthy social life, a job I like and want to keep (tho it’s getting physically more difficult) and am, for all intents and purposes normal.  I have Lupus, Raynaud’s, Sjogren’s, Fibromyalgia, and Meneire’s and I am declaring Guerrilla Warfare on Chronic illness.  This is where I will vent and share- a safe place for you to do so as well.

And I can’t figure out for the life of me why my title only has one r in Guerrilla.  Grrrrrr!