Just call me the Bionic Princess

I took a trip the other day. We were in the car, but the mode of transportation for this particular voyage was a rather peculiar and bizarre mental permutation carrying me to an other-worldly destination, no weed involved.

Yes, I was trippin’.  

Although I took no pleasure in it.

We were driving back from an appointment with a surgeon a week after having the most bizarre operation of my life. And that is saying a lot.

You probably know I have type 1 diabetes. And you probably know I have gastro-intestinal issues due to the diabetes. What you may not know is that those issues became so problematic, drastic measures needed to be taken.

When you hear the word “implant” your mind probably takes you to a visual of the female anatomy in a “big” way. At least that’s where my mind automatically goes - what that says about me I don’t know.

You probably didn’t think “Enterra” (hereby known affectionately as “Terry”), a gastric pacemaker of sorts.

{Insert warning here. The following description is not for the faint of heart.}

Here’s what it is: A machine implanted into my abdominal wall, just left of and below my now saggy belly button. (The poor thing. What did they DO to me under that general anesthetic?!?) Attached to the machine are two wires, now woven through my abdomen and attached to either side of my outer stomach lining.

Here’s what it is supposed to do: Stimulate my stomach to empty and my intestines to contract by sending an electrical current up the wires to the nerve endings in the stomach, thus creating movement and a satisfying result, if you catch my drift.

Here’s what’s happening: The current, while supposedly not strong enough to actually contract muscle on contact, has been causing me electrical pain in my tummy and up under my ribs. Thus the trip back to the surgeon to have Terry turned down. (I think he has ADHD.)

It’s been enough of an adjustment having this hard lump flopping around in my flab (picture me rolling over in bed...kathump, kathump each time I roll - lovely imagery, I know.) It got really weird though, when I was laying on the exam table with the doctor holding a mobile phone-sized device up to my belly saying, “It uses Bluetooth technology,” as he tapped the screen a couple of times.  It took 22.5 seconds to change the settings and “calm Terry down.”

What the heck kind of world do we live in?!? Seriously. I am like the Bionic Woman of the 21^st Century!

Instead of superpowers though, I have gained a few limitations. Apparently, avoiding an MRI is a MUST (possible death) and I am no longer able to go through security scanners at airports. (I am a card carrying member of this “feel me up only” club.) The doc also said to avoid hanging around the security beepers in front of retail stores. Good grief. Does he not KNOW how much I like to SHOP?!?!?

Oh and get this...eating triggers pain. Good grief. Does he not KNOW how much I like to EAT?!?! A few bites an hour is about as much as I can handle. On the bright side, who needs a diet club when you have Terry as your new best friend?

Even though heart pacemakers have been around for years, Enterra is new technology and there are still many questions revolving around it. I have spoken with five medical professionals about Terry, and EVERY SINGLE ONE OF THEM said, “No one really knows how or why it works, just that it does in some people.” As I appreciate their honesty, CONFIDENCE is not exactly what I take from that statement.

Terry boasts a 50% success rate, so here’s hoping the other woman having the surgery last week gets no result. No, no. That’s terrible. I wouldn’t wish this on anyone. Here’s hoping that starting with me and her, the odds jump to 100%!

In case you are wondering, since the Bluetooth tweak, symptoms have settled but not disappeared. And although it is too soon to tell for sure, I have not received any major benefit on the throne, as much as I try to regain my title as princess.

The good news?

Don assures me I am still his princess.

What was that? Oh...

As in high maintenance.

Right.

Well.

Still.

I think I deserve a new pair of shoes for going through all of this, don’t you?

There should be at least a couple of implant “perks.” ;)

 

 

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Fashion War: London vs. Liverpool

It's time we talked about fashion, yes?

I've now been to all four of the fashion capitals of the world: London, Paris, Milan and Liverpool. Wait. No. Liverpool is not New York. Darn. I thought I had "arrived."  Oh well. I guess New York will continue floating around in my dreams for now. Wait for me please, Manhattan. I'm coming.

I mention Liverpool because it plays a significant role in the UK fashion scene. Having visited London only a couple of short weeks after Liverpool, I couldn't help but notice some stark differences.

One city bragged impossibly high heels, tight skirts, red lips and hot-rolled hair. The other touted both a classy and mod vibe, even when casual. They've got it going on.
Can you guess which was which?
Sorry Liverpool. No disrespect, but London wins this one.

I'm not gonna lie. It took me a full day to pack for one night to London. I felt it necessary to try on half my wardrobe to get it just right. And I am a girl who likes options. Like, three per day. Unfortunately, Don was carrying all of our belongings in a back pack so I had to be smart about this. Once my clothes were chosen, there was no going back.

I am pleased to report that I was not embarrassed by my choices. I did, however, regret my footwear. Opting for fashion over comfort, I paid the price dearly with raw blisters and bruised toe bones by the middle of the first day.

What I learned about fashion from London was this: You can be comfortable and stylish at the same time. And I base this observation just on Londoners. Picking out the locals was easy due to hairstyle and clothing choices alone. Southern Brits are well put together.

As I hobbled around looking okay but in foot hell, envy turned my blood green as I watched women in high top runners (aka baseball boots) walk by comfortably and confidently having paired them with blouses tucked into fitted, just below the knee skirts. Add a high bun, French nails with subtle makeup and it was a heavenly recipe for casual fashion success.

The men knew their stuff too. With clean-shaven faces, short groomed hair and tailored trousers topped with shirts buttoned to the top, Armani himself would be proud.

Sure, denim made appearances on both men and women, but even then it spoke of chic rather than shabby. You know. When you see a pair of jeans and think: expensive. They were probably purchased at Harrods.

Yes, I also saw women in Manolo Blahniks, but they boasted exquisite elegance rather than tacky tart. Think Vogue vs. Sun girl.

Moral of the story? Don't try too hard, or at least don't look like you are trying too hard.
I'm not saying don't put effort into your look. A friend's daughter has been said to just open the dryer door and put on whatever sticks to her. Picture plaid skirts, floral shirts, striped scarves, and wool mismatched cartoon character socks all hanging on by static cling. While that may work for her, I don't recommend this approach for the average person. Being fashionable takes some thought. I'm just suggesting that what you wear advertises your personality and goals and if overdone, can achieve the opposite of your intentions. Success, seduction or slop - What are you aiming for?

Liverpool, I loved you. I really did. And I love the diversity of style in this country.
But if you ask me...
I'd look to London for inspiration and rock those high tops and shapely skirts with graceful style. Especially when shopping and touring the Tower of London.
Your feet will thank you.
Trust me on this. :)

I Didn't Tell You Everything: After Beth and the Beatles

In my last blog post I didn't tell you everything.
Yes, my Scouser friend Beth brought me pure joy while dancing the jitterbug, in the Cavern, in Liverpool. And yes, I wept with tears of joy watching her.
But the story doesn't end there.
After a few more Beatles hits, ache crawled into my legs demanding a break. As I sat soaking up the music, my abdomen began to cramp and nausea crept up my throat. The music not at fault, it was then I was reminded I am a sick person.
Two profound emotions collided within me. First, I was struck by how the ability to touch, smell, and see are gifts still in my grasp. One of my ailments had leapt to the forefront of my mind. You may or may not know, in the past I have experienced temporary blindness and it could realistically become permanent due to retinopathy from the Diabetes.
Suddenly, my surroundings came alive: The curved rock ceiling, rough to my fingertips and every inch marked with signatures and messages of which I can only assume were of patrons; the red phone booth tucked in a corner, characteristic of this piece of the world; the window housing John Lennon sunglasses for sale, invoking want; the dark tunnel leading to the toilets, fear of behind the door overriding urgency; collective body heat I can only describe as close; the smell of sweat, beer and a hint of mint wafting throughout the dim light; Men and women, young and old swaying, even hopping to the beat. Alert sensations brought me an understanding of the Cavern I would've otherwise missed, had I only danced. Now I was fully living.
Conflicted, profound sadness also pierced, adding metaphorical pain to the physical. As I closed my eyes and silently begged the music to overtake the disease, the band changed its tune.
Wonderwall by Oasis filled every ear, soul
 and rock pore in the cave. Voices rose to the ceiling, the words known to all:


 There are many things that I would like to say to you
But I don't know how

I stood, grabbing onto Don, who was already rocking to the beat.

...maybe
You're gonna be the one that saves me

As tears rolled down my face our eyes locked and we knew. We just knew. I don't know how else to say it.

He's already saved me. He saves me every day.

He wrapped his arms around me and squeezed, while I sobbed every ache and joy into his chest.

The Cavern is just a club, deep in the ground, with bored but professional tribute bands playing the Beatles night after night. I'm sure inebriation will have caused amnesia for many, just a meaningless night of partying.
But for me, the intense poignancy of my engagement with sense, there deep beneath the street, has carved its memory into my very being.

And all the roads that lead you there are winding
And all the lights that light the way are blinding
There are many things that I would like to say to you
 
But I don't know how

Beth and the Beatles - The Perfect Union

Diabetes has wreaked havoc on my person as of late. From gastro paresis at its possible worst, to nerve pain disallowing sleep, to recurrent frozen shoulders, life has been challenging to say the least. I will not lie...I'm tired. Don is tired too, and I can't bear to watch this two way mirror. No matter who looks at who, what we see is fatigue. With that said, Don is an unwavering rock, faithfully holding me up through thick and thin.
He's not the only one keeping me going.
This past weekend, a group of our UK friends drove up to Liverpool to celebrate several birthdays. After a day of wandering the streets and getting a guided tour by Beth, a long-time-ago Liverpool local, we went for a lovely dinner and then found ourselves at the Cavern.

As I'm sure you know, Liverpool is the home of the Beatles, and the Cavern is where it all began. Typically I am not one to go clubbing, but this was one worth experiencing. As we wound down multiple flights of stone steps, I fought against my claustrophobia and tried to take it all in. Knowing this was the first club the Beatles ever played gave me the stronger push downward than the tightness in my chest pushing back to try to catapult me up and out.
A tribute band played the Beatles all night, taking requests. (As classic as the Beatles are, it's gotta get pretty old for them after months and months of this, no?)
After dancing to a Hard Day's Night, and I Wanna Hold Your Hand, plus many others, my legs needed a break. As I sat, I Saw Her Standing There started to pump through the speakers. At this point, something magical happened. My friend Beth caught the rhythm.
As she started dancing the Jitterbug, the first emotion to come over me was awe. I mean, she was really, really good. I haven't witnessed that much energy since watching Footloose a gazillion years ago.
Next came pure joy. The kind of joy that forced tears to stream down my face while my mouth was so turned upwards in a smile it hurt. I couldn't stop - crying or smiling. He adorable black dress swished and swirled as she twisted and turned and jumped and twirled. Next thing I knew, her husband Jason  joined her. This pushed me off the cliff of supreme happiness. To see the two of them in that moment privately together, for the whole world to see...it was just too much.
As I mentioned, life has been hard. But as I watched Beth I was thrust into 3:13 minutes of undiluted jubilation. It was freedom encountered through the infectious essence of free-spirited friends. Chained by medical tests, appointments, exhaustion and pain, it's a freedom that's been lacking within me as of late. That dance was a gift so pure, particularly since it was incognizant and unintentional, yet so open for the taking.
So with an indebted heart and tears in my eyes, I say thank you. Thanks to the Cavern for giving the Beatles a shot, to the Beatles for transforming the music scene on so many levels, and most importantly to Beth and Jason for dancing so spontaneously and uninhibited. Memories of that three minute break from life's hardships will carry me far.
Thanks again my dear friend Beth.
I Saw You Dancing There. ;)

The Tower of London, Hospital Style

I knew it was going to be interesting when I noticed the doctor's scrubs on inside out.
Seriously.
No joke.
Dreading my gastroscopy, endoscope, or whatever you wish to call it when they push a tube the size of a garden hose down your throat, through your stomach, and into your duodenum, the tag on her scrubs waving in the wind was almost enough to make me forget that I was entering a torture chamber.
Almost.
Bubbly is too weak an adjective for this doctor's chipper voice. That is, until, she clued in this was not the first time I had been to the medical equivalent of the Tower of London and knew what was coming.
"Oooh. So you've had this test before."
Yes, yes I have. Twice.
I don't mean to be a whiner but in order to invoke your sympathy, I must paint you a picture.
As I lay there on my side, having had four ineffective injections of sedation which is meant to calm and cause amnesia, a plastic mouth guard is placed gently in my mouth for everyone's protection.
No. That's not true.
It's meant for the protection of the garden hose.
Anyhow.
At this point, the computer crashes and they need to reboot. Twice.
Drool starts to trickle down my face. (Gag. Remember, I hate spit.) I jumped at the chance to have it temporarily removed while they trouble-shooted the situation.
A few minutes later and mouth-guard back in, they were ready to go.
"Just swallow the tube," she said.
"I'm pumping air into you now," she said.
"You're doing great," she said.
My involuntary and violent gagging caused tears to roll down my face. This is when the claustrophobia kicked in. Nice and strong. Gagging on a hard plastic tube took my breath away and panic set in.
"You're doing great," she said, as some angel in the room grabbed my hand. I may or may not have squeezed it white as I clung on for life.
Oh, that's nice. I can feel the tube probing my duodenum. So that's where that is. I've been wondering.
"We'll just take a few more biopsies to be sure we have what we need," she said.
Sure. Take your time ladies. I'll just munch on this tasty tube until this picnic is over.
And then it was. Just like that.
So I'm a suck. A big baby.
Other than a scratchy throat for a couple of days, you'd never know it happened. They didn't leave a mark.
A bit of negative, no wait...positive...no, I mean...not good results were given to me and I was told the biopsies would show more.
As I waited for the inactive, useless, I-can-remember-everything sedation to "wear off" in recovery, the next guy could be heard loudly and obscenely dry-retching as they tried to do the test. No-go. He couldn't do it. They had to send him away and told him to see if his GP wanted him to come back.
Ha! So I'm not such a big wimp after all. Who's the baby now?!
That's terrible. I'm awful. It really was traumatic and I totally feel for the guy. Especially if he has to go back and do it again. Yikes.
What I really want you to take away from this woe-is-me saga is the part buried deep in the story-telling.
That angel that held my hand? That's what got me through.
If you are in the nursing or caregiving field, or if you simply ever have the opportunity to hold someone's hand in distress, don't underestimate how much it means.
I have no face to that hand, because as I began to thank whoever it belonged to, they turned to go as they said "you're welcome." But I will remember it's warm, solid and comforting grasp forever.
To all you angels out there...
Thank you.
Oh.
And.
Turn on the light when putting on your scrubs!

The Most "Special" kind of Proctogram - Audience Included

I’ve hit rock bottom. At least, that is, where it comes to medical tests.

I’m sure I’ve mentioned in the past my issues with my gastrointestinal system. My aim with this post is to enlighten you as to what goes on behind closed curtains, without being grossly graphic about it. There’s just one problem with this goal. The title of the test I wish to talk about is, in itself grossly graphic. If you wish not to know its name, close your eyes for two seconds and then continue reading.

Defecating Proctogram.

Yes. It’s true. There is such a test and I had to have it. This DP, as it will now be so referred, had been described to me before test day so I had the pleasure of anticipation, like before you go on a hot holiday and start to pack. Yeah. Just like that.

 

 And now I have the pleasure of sharing it with you.

After sipping barium for half an hour - that in itself good times - I was led into an X-ray room and greeted by not one, not two, but three people. I’ll be honest. They could’ve each had two heads and an extra arm and I wouldn’t have noticed at this point. Your name? Sorry. I really don’t give a rip right now, knowing what you are about to do to me.

So, in my gown, I was asked to hop up on a four-inch wide hospital bed and lay on my side. At this point, I am giddy with anticipation. They were about to give me the best present ever: more barium, only I wasn’t drinking it this time. No, this time, they needed two separate tubes to do the job. I’ll let you read between the lines. Why the second tube you ask? Extremely valid question, I answer. And that is my best answer - my only answer. It is a mystery of the gods as to why I would need barium...umm...there.

Then, after such a great present! it is my job to umm, control leakage, as I walk to a commode chair made of cardboard. “Comfortable?” Nurse Three Arm asks? Oh yes! So comfortable!! It’s like a dream!

A circular x-ray machine is lowered around me and my claustrophobia kicks in and the male doctor begins giving me instructions while looking me in the eye as I sit in my gown on the commode trying not to breathe as to not let out any barium. (Yes, I know that was a run-on sentence. That was for effect.)

He then would disappear all the while shouting encouragement for me to, umm, well, do some business. Then, stealthily like Katy Perry as a Dark Horse, he would show up in front of my face and chat. Aww. Thanks Doc. I LOVE sitting here talking in detail about my, umm, system, while almost naked as your nurses hover in the background, most likely taking pictures. Wait. That’s exactly what they were doing. Taking pictures. Excellent. Show the world! Post them on Face Book! Tweet away!

I’ve had many a medical test - so many involving pain, which this did not and for which I am thankful. But I thought every ounce of pride had already been squeezed out of me from previous tests and procedures. Apparently not. Apparently that last ounce gets forced out during a DP. It took every ounce of my being to not laugh out loud and to also not burst into tears as Dr. Two-Head was yelling, “Push, Push, you’re doing great! We’re getting some great pictures!” and then came to reinforce this face to face.

Such a nice doctor, he was even so kind as to give me the results whilst sitting there on my cardboard toilet seat. Of course in Susie fashion, I have not one, not two, but three problems that may or may not need attention. Why That’s Fantastic!

You are probably wondering, WHY oh WHY would I write about such a humiliating and disgusting experience.

So you feel sorry for me?

No. That’s not it at all.

Here’s my reasoning: Obviously since they have such a specialized machine for DPs and I am not the only human with gut issues, many have gone before me and many will follow. And if not this particular test, so many people will feel vulnerable and exposed in some fashion in their lifetime. I want you to know you are not alone. Yes, my vulnerability has often resulted from Type 1 Diabetes and other medical problems, but so many people suffer with other ailments which dictate the need for tests and treatment.

Or, some of you have felt exposed due to a spouse cheating or from sexual abuse. There are so many ways a person can be violated, the list is endless.

I am putting myself out there to say, once again, you are not alone. Everyone goes through hard times. Why not be honest about them and share in our difficulties?

 

Hang in there.

And if you ever do find yourself in a DP sort of situation, remember me - that I survived and now, a couple of weeks later, even with the scene burnt into my mind’s eye, I can actually laugh out loud about it

Don't let life suck you into the toilet. Laugh with me, yes?

 

Is Forty an F Word?

So, I turn 40 today and I want to vomit. Mostly the vomit part is due to my gastroparesis, a complication of the old Betes, but the number on my non-existent cake doesn't help.

Yesterday on my FB status, I said,

"When I was younger, every year as I got older, I thought, "In your face!" directed at the doctors who told me I'd probably only live until 25. I would celebrate knowing I conquered another year. It was an accomplishment. Somewhere along the way, I began dreading birthdays, seeing them only as one step closer to the inevitable. I want to be that 'younger' Susie again. The one who sees joy rather than dread no matter what the number. (Wouldn't mind less 'sagging' too So, even as I fight the anxiety of my upcoming milestone I will say, 'Screw it! I made it so far!! It's time to Partaaaay!!'"

Well, that's who I want to be. Apparently I'm not quite there yet.

As I counted down the minutes on the clock last night, I offhandedly stated that I had less than an hour in my 30's. Then I promptly burst into tears. Really Susie? Really? Because of a number?

As I sat there having my pity party, (Hey, I did say it was time to Partaaaay! ;) Mr. Man asked what was upsetting me. Was it that I'd feel older? It's just a day, he said. No. That's not it. Was it that I would look older? It's just a day, he said. No. That's not it either. Was it that things get all saggy and such? It's just a day, he said. Well, that's already happening so, no, that's not it.

As the tears squirted out a little more violently I blurted, "It's my cool factor. It'll be totally gone." At which point he reminded me he is in his forties, thank you very much.

"But I kept you cool! Now we are in a different category. We are {choke} middle aged."

I have the pleasure of filling out a lot of medical questionnaires, what with so many doctors and specialists on my dance card. Now I'll have to check that box. You know the one. The one that says I'm too young to not know my hospital gown is on backwards and open to the world revealing {ahem} bits, but too old to wear hot pants whilst on that dance floor without looking like a Cougar. Wait. Nope. Puma. Apparently that's what a woman on the hunt is called in her 40's. Ugh. I've even graduated cat-on-the-prowl categories.

I went on to explain to Mr. Man that it felt mentally not only like a day, or even a years leap. I might as well be going from 39 to 75.

Forty, an F word of the nastiest sort, has too many other friends with the same initial: Fat, Frumpy, Freak Show, Foot Rot, Fatigue, Foggy, Faux Pas, Frustration, Foreboding, Flawed, Fibroids, Frozen Shoulder,  Fraxinella (look that one up!) and last but definitely not least, Fossilised.

I realize I have more than likely just insulted, angered or at least alienated many friends and readers with all this babble. Let me be clear. I have some very hip-happening older (See? Ugh.) friends, and by that I mean anywhere from 41 to 80, whom I dearly love and admire. This glitchy perspective in my head applies only to me.

I suppose not all F words are bad. Fashionista, fun, funny, flawless, freedom, free spirit, fine, firm (as opposed to flabby), friendly, frilly, Friday and last but not least, frisky all have their benefits and can be applied to a 40-year-old.

I guess I have a decision to make. My options are limited so I will stare forty in the face and say, "F-F-F-Fine! I will vomit purely for physical reasons and get over myself. Old(er) friends, move over. I'm joining your club. Please teach me how to still be cool? (As if I ever was!)

Oh and did I mention I'm going to Milan, one of the four fashion capitals of the world, to celebrate?

K. I'll shut up now.
;)

Diabetes, Fashion and Other Fun Stuff - A Blog By Susie Schwartz: The Natural Beauty FB Challenge: I Decline

Diabetes, Fashion and Other Fun Stuff - A Blog By Susie Schwartz: The Natural Beauty FB Challenge: I Decline: I've been challenged. Over the past week, ladies are being nominated to post a picture of themselves with a naked face - makeup fr...

The Natural Beauty FB Challenge: I Decline

I've been challenged. Over the past week, ladies are being nominated to post a picture of themselves with a naked face - makeup free. My understanding is this is to show that you are unashamed of the natural beauty that you are, created to be you without a mask. Only for me, this challenge stimulates a different response.
Let me explain.
I'm being brutally honest and vulnerable here by telling you this: When I don't wear makeup, people don't tell me that I'm beautiful. They ask me if I'm sick.
Every. Single. Time.
I have spent much of my life actually being sick, and I fight against that daily. The last thing I want is to look sick, especially if I'm feeling good.
I'm sure it's true that people who know me and love me see the essence of beauty in parts of my inner being (some of it though, is not so pretty), causing the outward appearance not to matter. I'm sure of this because when I see a friend without makeup, it changes nothing about the beauty I see in them. But I don't wear makeup for others. I wear it for me.
Some may think that women wear makeup to either draw attention to themselves or to hide behind a mask. Both I'm sure are true for some. But many of the people in my life, including myself, wear makeup because it enhances our features, giving us confidence and a satisfying view of our reflection in the mirror. I'm comfortable with that reason - as I know many of you are as well, since the majority of you who posted naked face pictures will also put makeup on one day soon.
It really doesn't matter to me whether you are more comfortable with or without makeup. You still are who you are. I commend you either way.
To be clear, I have no problem with all of you who posted your au-natural selves. As long as you felt no pressure, I say good for you. And if you were nominated, I'm sure it was with the best of motives, as I'm sure it was for me.
Could I have posted one? Sure. Are there pictures of me bare-faced on FB? Yes, there are. But in response to this challenge, I have declined to post one. Partially due to the fact that I was not comfortable nominating women that may not be comfortable with it and might feel public pressure, and partly because I do not want a list of comments telling me I'm a natural beauty. History has proven that is not the honest response to my naked face. Don't worry. I'm fine with that.
Just don't judge me for putting on makeup.
Why? Because I don't feel sick today.