"Clutch Your Chest and Throw Yourself on the Ground" Part 2

Pulling into the drop off loop in front of the A and E doors, Don parks off to the side and out of the way. Before the driver’s side door is even closed, a security guard is sure to tell Don to move the car asap. (Now, I get that the loop needs be kept clear for emergencies, but, umm, I am the emergency at this point, yes? Back off dude. I could die at any second.)

I check in only to wait a short five minutes while the hoodlum in triage gets his arm wrapped, his saggy-panted (trousered) friends loitering in the door, enjoying the show.

My name is then called and I go in alone, since my dearly beloved is still outside properly parking the bloody car. (Sorry car. It’s not your fault.)

Mr. Triage asks a few questions, types a few notes and immediately does an ECG. (Which comes back normal.)

“Are you always this pale?” Mr. Triage asks. Umm...I can’t see my face {when I’m with you.} (Actually, that would’ve made such a better lyric, yes? At least it makes more sense even if lacking in poetics.) So that’s a tricky one. Am I more pale than my usual pale self? Where is Don when you need him. Oh right...the car.

I did have some concern for Mr. Triage as his breath is more laboured than mine had been at the peak of the whole fiasco. Out of shape? Asthma attack? Heart attack?? This line of thinking might border on oversensitivity or even paranoia, but I feel for the guy. With a quick phone call a wheelchair is ordered (for me, in case you too are concerned for him) and Mr. Triage opens the door so we will know when it arrives to whisk me away for the test.

Here’s where it gets a little weird. Piecing together what Don witnessed in the waiting room, (Yes, he was back from the oh-so-important car parking.) and my perspective from inside the room, we still can’t conclude the why as to what happened next. A mother, father and a four or five year old son had checked in and were told to wait for triage. The second the door opens, with me sitting inside waiting for my wheelchair, the three of them move into the doorway totally blocking it and just stand there, staring at me for the next four or five minutes. They do not glare. They stare. I stare back. Umm...I just had a heart attack people. BACK OFF. (Okay, it’s four a.m. Give me a break.) Even Mr. Triage is shocked to see them there as he peeks around his desk to see what is going on. A teensy bit of satisfaction may cross my face as my wheelchair arrives and this little family of three have to move out of the way. As I am whisked away I can’t help myself. I meet Mom’s eyes, silently gloating that my case is serious.

After the driver wheels me backwards to my curtained-off room (insert motion sickness here), we arrive to see two chairs and a bed. We sit in the chairs. Why did you not get on the bed, you ask? A nurse walking by asks that same question until I simply lift my arm and point to the bare, unmade bed. To her credit, she promptly gets the disinfectant spray, wipes it down and makes it up with (hopefully?) fresh linens. (This is where I point out that hospitals can be one of the most dangerous places for sick people with all the viruses floating about - yet another reason not to rush in unless absolutely necessary.)

I climb up onto the bed. (The word bed is a little deceiving, as that would imply some level of comfort.) But I have to admit, so far the staff have done everything right. (Minus the backward wheeling.) I got in immediately. Triage took me seriously. An ECG was done. And the bed was quickly made. After many an emergency room visit, this one impressed, so far.

A nurse or lab tech arrived within half an hour, inserted a line in my arm and took four vials of blood. Then she said, “This could get messy. I have to take a vial of blood.” Umm...you just took four already. Did you think I didn’t notice? And why would number five be messy? Regardless, the last vial, a different shape being longer and narrower than the others, did not cause a mess and she assured me it would all be sent to the lab immediately. Results would return within an hour or two and then the doctor would see me and decide what came next.

Absent of working wifi, I decide to try and get some shuteye while we wait. Always in some level of pain in the night, this just wasn’t happening – not with the lights, noise and the non bed-like bed.

Still I try. I close my eyes. My thoughts turn to pancakes. Yes, my pillow is but a flat pancake, void of maple syrup or Nutella. Now I can’t stop thinking about Nutella.

My blood test results are returned and hung on the wall to taunt. Is my heart okay? What will the test have shown?

Two hours later a doctor appears to discuss my case.

“Describe the headache to me. How long did it last? What were you doing when it started?”

I answer, adding the list of other symptoms that occured.

“You may have burst a blot clot in your head. We call this venous thrombosis. We may need to do a CT scan. I will discuss this with the consultant on duty. First though, let’s do some neurological testing.”

Umm, okay.

I follow her finger with my eyes. I keep both arms raised in the air. I push against her palms. I pass all the neurological tests.

“Okay, so I will just go and speak with the consultant and he will decide if you need further testing.”

“Sure, but wait,” I say. “What about the heart blood test? Is it normal?”

“Oh, we didn’t do that test. It doesn’t look like it was ordered.”

I turn my head and meet Don’s eyes. She did not just say they didn’t do the test.

“Umm, I have had type 1 diabetes for 32 years and came in with symptoms of a heart attack and you didn’t do the test?”

“Well, I’ll check again but I don’ think it was ordered.” She walks away to talk with the consultant.

A silent and invisible question mark stands tall like a statue between Don and I as we wait for the doctor to return.

The curtain pulls back and she reappears with their conclusion. No CT is necessary and no need for the test to be ordered.

For the sake of rationing words, I will just tell you this. For the next 10 minutes or so a debate came to life as to whether the test should have been done, based on symptoms and my risk of a cardiac incident due to the diabetes. Apparently, I am too young and too healthy to have a heart attack? This conclusion was drawn after no questions as to my history of high blood pressure, high cholesterol, and after giving the list of multiple serious complications from the diabetes. Hey, I love the idea of being at low risk for heart disease, but seriously?! AND YOU TOOK FIVE VIALS OF MY BLOOD.

We left the hospital with mixed emotions. Was I probably fine? Yes. Could they have ruled out anything serious? Yes. Did they? No.

Knowing we had an appointment with an amazing specialist the very next day (for other reasons), we knew we could get an honest opinion as to whether we were we right in going in and should they have done the test and could it still be done.

His answers went like this: Yes we did the right thing. Yes, they absolutely should have done the test, (when in fact, almost everyone who walks through the door gets the test) and sadly, yes, I am at a higher risk than the average person for heart attack. (An atypical one, thanks to the Betes.) And without a baseline from the time of the incident, a test at this point would not give us a comparison, thus telling us nothing.

We missed the window.

At the close of this discussion, the advice we received was this: If you get these symptoms again, go in and present your symptoms.

“As in, clutch my chest and throw myself on the ground, writhing in pain?”

“Correct.”

Message received.

"Clutch Your Chest and Fall to the Ground" Part 1

It was Saturday night. Alarm bells rang. Horns blasted. Lights flashed. I clutched my chest and fell to the floor screaming, carpet burn instantly burst into flame on my right forearm and cheek. My eyes closed and there it was – a time-lapsed video that was my life. It played out longer than I expected for a mere 42 years. (I guess no one ever said I was boring.) So this was it. This was how it was all going to end. I was a total cliché - death by heart attack from 32 years of type 1 diabetes.

Actually, that’s not how it happened at all.

You see, I am a curious human specimen, the word “typical” impossible to apply to my diseased body. (Okay and maybe my whole quirky self. Never mind that.)

Yes, I did end up in the emergency department of the largest hospital in the area due to symptoms of a possible heart attack. It just didn’t happen how one would expect.

It all began mid-evening with an indescribable localized headache. (Wait. I’m a writer. Challenge accepted. Let me try and paint you a picture. It’ll be fun.)

I suffer from stress headaches, eye strain headaches, hypoglycemic headaches, hyperglycemic headaches and puking migraines. This was not any of those. Picture in your mind, a glass ramekin. (Ooo! Creme Brulee! Yes please!)  Now, eat that crème brulee. (Or feed a friend. Just please don’t throw it away!) Now fill the ramekin with tnt. (Not the song, TNT by ACDC. Actual tnt.) Pack it in tight, place it under your skull northwest of your left eyeball facedown with the open end resting against your brain, and then watch it explode. I’ll tell you what happens next. With nowhere to go, the wreckage swells and smokes. Tears and nausea join the attack as if somehow this will relieve the pressure.

Puke. Sob. Lie down. Try to breathe. Sob. Breathe some more.

25 minutes and two cold compresses later the headache settles into acceptable proportions and I get up.

Okay, so what the heck was that?

Puttering around the kitchen in my dressing gown, I am thankful the worst is over.

Suddenly my hand flies to the front of my neck as a shallow knife slices upwards. There it is again. And again. I’ll be honest...this does not feel quite right.

I sit.

Okay. So my neck is calming down. I’m fine.

Wait.

Why is my left shoulder aching? Oh wow. It is really aching. And there goes my whole left arm. As tears flow, I scoff at the word “agony.” It is but a weak child cowering under the torturous monster that has consummed my left side. Why is there a sharp tingle shooting up my back?

Wait.

Okay. That’s gone.

But breathing just got difficult. Did I run up a three mile, 10% grade hill in the last two minutes? No. I just stood up and walked a few steps.

And...

There it is. My chest is tight. And is that a strange twinge of pain rippling across? It’s not terrible though. My arm hurts worse than my chest. And my head is much better. The knife at my neck is gone. As I silently try to process what might be happening, Don’s voice breaks through my thoughts.

 “So, you know you are having all the symptoms of a heart attack, right?”

“How do you know?”

“I just looked it up on the internet.”

“Oh. Okay. But heart attacks don’t usually start with a headache, do they?”

“It didn’t mention a headache, but you do know you are not normal, right?”

Good point.

You may be questioning why the next words I type aren’t, so we went to the hospital. Judge if you must, but if I went to the hospital every time I had a new or weird and whacky symptom, they would probably charge me rent. And you have no idea how exhausting it is to try to explain me, to a doctor who knows nothing of my situation or history, only to be sent home 10 or 14 hours later with no diagnosis. Plus, my symptoms were happening in a sequence rather than all at once, so this was not a simple case of, so we went to the hospital.

Some time goes by while I play ping pong in my head, the opponents being Stay or Go.

Soon though, everything but my arm and shoulder (okay and my chest a little and maybe my back so mostly everything) are feeling much better. Crisis averted, right?

As I sit in my bed, now approximately 2:45 a.m. doubt sets in. Am I okay? Should I have gone in? But it must be too late now, right? Then Google explained there is a blood test that can determine whether a cardiac incident has occurred or not. Hmm...Should I be going to get this test? The episode was over (?) but maybe I should find out if any damage had been done to my heart? I hear Demi Lovato's song,  Heart Attack on repeat, deep in my brain.

Cue FB messenger.

My dear cousin and friend is an emergency room nurse back in the largest hospital in Winnipeg.

You there?

She was. After a lengthy discussion (and her giving me heck for not going sooner) she convinces me it probably wise to still go in and get the test, despite my symptoms now almost totally gone.

People with diabetes don’t always present heart attacks like other people. They can even have silent (painless) heart attacks, so this could definitely have been one. Do whatever you have to do. Clutch your chest and throw yourself on the ground if you have to.

Fine.

“Honey, I think we better go in after all.”

The Betes, B.S. and Bats: Guys, we Need to talk about this.

It’s World Diabetes Day, but I’d rather talk about fashion.

I don’t feel like thinking about blood sugar highs and lows that constantly exhaust me. I don’t feel like counting the 80,000+ injections I have jabbed into my flesh in the last 32 years, causing permanent scarring in the form of hard lumps below the surface.

Or the gazillion (Probably about 100,000, no exaggeration) finger pokes that don’t really hurt, but are so annoying when you are trying to pump out the sample and suddenly blood bursts out and splatters all over your friend’s off-the-lot new car. And the used strips! Yikes! Those things get EVERYWHERE. Think avalanche of white and grey and a teensy bit of dark red cascading onto the carpet of your neighbours living room; down your cleavage into your bra; into the crevice of your movie theatre seat.

Speaking of which, have you ever tried to test your B.S. (Interpret that however you wish.) in the dark with no back light on your meter?!? You think the light from the movie is bright enough to see and just when the number starts flashing, you’re in a cave of bats, being catapulted into a pit of black. Wait. The bats have flown out into the night moon which illuminates the screen. And...your meter’s auto shut off kicks in, beeps and goes blank. (I think I heard it laugh. Yes, the machine.) You whisper a choice word or two under your breath as to not disturb the man with bad breath sitting beside you, a look of disgust on his ashen face aimed your way highlighted by the movie moon as you suck the blood off your finger so that you can start all over. Repeat one or two more times and...two droplets of blood drip onto your white jeans before the flashing number on the meter informs you that you need insulin, stat.

Imagine now, that you must either stand up and push past the five people trapping you in the row of theatre seats, risking movie-interruption-rage (it’s a thing) to go to the restroom or, dig into your bra through the neck hole of your form-flattering v-neck and pull out your insulin pump, now risking Mr. Bad Breath’s judgement all over again. Nightmare.

I also don’t feel like contemplating the collection of complications my body endures due to diabetes. Things like neuropathy which flashes and stings anywhere and everywhere. Or Gastro-paresis which almost paralyses my whole intestinal system creating nausea and, ahem, other problems, like, const...antly. (See what I did there?) Or the blindness that occurred and could reappear. (Not funny, I know.) Burning feet? Check. Chronic fatigue? Yup.  Electric shocks zapping and biting and zinging like unauthorised war torture? You got it. 

I hate the fact that my uncle, a fellow person with diabetes and the uncle who wormed his way into my heart when I was two has this disease also. You know, the one who endearing called me motor mouth for the first 20 years of my life or so, and has just lost a toe due to an infected ulcer, is battling heart disease and struggles to breathe without oxygen. No, thinking about losing him is too hard, too much. Did I mention both Dads have diabetes too?

I for sure don’t want to talk about the tally of lives this disease steals on a daily basis. Heart disease is the leading killer, the highest percentage caused by diabetes.

No, I want a diabetes break. I want to talk about new winter fashion trends and edgy haircuts and makeup contouring.

But I can’t. Not today.

People with diabetes don’t get to take a break. We can’t escape our bodies for a week, a day or even an hour. Our traitorous blood courses through our veins having it’s way with us whether we like it or not. It wreaks havoc; attacks; destroys. It exhausts, operates in constant flux - manipulating and confusing its host, and it never sleeps. Sometimes it is weak and slow to devastate. Then we celebrate. Unfortunately, most people with this disease, in the long run, do not come away unscathed. Damage is Diabetes Mellitus’ middle name.

We need resources. We need research. We need support. We need patience. We need compassion.

We need a cure.

It’s not about me. My story from this point on will include complications on every page turned. But...it is not too late for so many – For children newly diagnosed and teenagers with little deterioration and my husband’s cousin and my dad.

We need Hope.

World Diabetes Day is a day for raising awareness, gaining understanding and yes, learning the hard truths of this epidemic.

Please...

Give. Learn. Care. Share.

We need to talk about this.

 

I Hear Trumpets

Pre awake:

My friends and I are in a tiny car. We are careening down a steep hill after just driving through a red light and my Manolo Blahnik heels (Hey, it’s a dream, okay!?) keep slipping of the brakes. Up ahead, an intersection. A kitten sits on the back of my seat near my head. After halting in the middle of the intersection, an angry dog rolls down my window from the outside. (Sure. Why not.) A crazy person sitting behind me (I won’t mention any names. But you’d know them if I did.) lunges forward and pushes her arm into the teeth of the rabid dog. (Makes total sense.) I hear myself whimpering from the pain that racks my body. (No. The dog did not get me. I just hurt.)

I also hear trumpets. (?)

 

Post awake:

The neighbours behind us are screaming at each other. (Wait. Actually, I think it’s just raining.) I am whimpering in pain. (Sympathy from my sporadically breathing husband? Nope.) I now hear whimpering from my sporadically breathing husband. (Actually, it is more like a choking; a sputtering; an air compressor dying a slow death.) A heater is slammed up against me scorching my skin. (AKA my sporadically breathing husband.)

I hear trumpets.

Rage Against a Machine

You know that feeling when you just want to rip a machine out of your body?!

No, I suppose you probably don’t. Fair enough.

But let me tell you...This is an itch I just can’t scratch. Only, less of an itch (yes, scratch the itch, like, as in, get rid of. I just told you I can’t scratch it!)  and think more of a pain in the, ahem, butt or, actually gut, that is really cramping my style. (Like, literally.)

I can’t know for sure but if my suspicions are correct, Terry is abusive and heartless. (Okay, for sure he is heartless.)

To recap for those wondering who the heck Terry is, and what does he have to do with itches and scratches and machines, well, "Terry," (my endearing and apparently undeserving nickname for Enterra), is a gastric pacer implant that is meant to help with my gastro paresis symptoms: slow stomach emptying, nausea, and intestinal problems.

Terry and I have been in this intimate relationship just shy of a year now and I can’t take it anymore. I want to break up. I mean, he’s not even turned on anymore. No really. He’s turned off. Okay, seriously people. What I mean is, he’s deactivated.

Why did we turn him off, you ask? Well, this was a test. Would he back off with the stabbing, crippling pain attacks if put dormant?

Nope. Even without power, that bugger has the power to rule my life.

Here’s my theory: Terry is a foreign metal object floating in my belly wall, with two tentacles, er, I mean, wires threaded through my abdomen and up to my stomach, where they are latched, sorry, I mean attached on either side.

Call me crazy, but perhaps these wires are TWISTING AMONGST AND RUBBING AGAINST MY INNARDS!?! Perhaps, just maybe, THAT CAN HURT!?!?!

{Graphic alert!}

When I was younger and visiting a friend’s cattle farm, I had the unfortunate experience of witnessing a cow in major distress giving birth. It was explained that the calf was dead inside her and the only way to save the cow was to feed a wire into the womb and (so sorry about this part) saw the calf in half with it in order to get it out.

I was traumatised then. I am traumatised now.

My point being...I am both the cow and the calf! The wires are inside me to save my life, but they are cutting me in pieces! (Or so it feels. Artistic license? Or reality. Even I don’t know and I’m the writer!)

Some of you are still stuck on the sentence where I called myself a cow. Go ahead. Get it out of your system. Snigger and snort if you must. Okay? Good? Glad to give you a chuckle.

Now, moving on...

I don’t know how, but I must get to the bottom of this. Could removing Terry give me a bit of my life back? (At this point, that bit would be HUGE.) But what if the nausea returns and I turn him on again (Oh yeah. I said it.) and he gives me relief in that department? Removing him would then remove the anti-nausea benefits. Which is worse - debilitating pain or constant and intense nausea? And what if the surgery to remove him causes more nerve damage resulting in a different kind of life-long pain? Can I even qualify for the removal surgery? How do we prove he is the problem? Do I need exploratory surgery to see what’s going on? Would the surgeon’s knife damage my oh-so-hypersensitive nerves thanks to diabetic neuropathy on this quest for answers, doing more harm than good? Would a CT scan be enough? I can’t have an MRI with dear Terry inside me. (Picture me lying on the bed, the tech flipping on the switch and Terry exploding out of my body like a G6, taking half of me with him. Two words: Yuck. Dead.) 

You probably think I regret having Terry in my life. Do I? With the perspective of hindsight, sure I do. But knowing only what I knew then, I had to give him a chance. We had to try each other out.

To be clear...Terry is a clone. Others have been in a similar relationship with a different outcome. Yes, being in relationship with a Terry usually involves pain, but for some, the positives are worth it all. And if they can make it work, then I wish them all the best. I truly do. Sometimes though, compatibility is a problem.

If I do break up with Terry, it could get messy. Custody battles of tissue and nerve endings could ensue. Anti-nausea alimony cannot be granted. Fees will apply.

So today, that’s my story. Talk about rage against the machine.

Maybe a new iTunes purchase is in order? ;)

 

 

 

 

 

Yes, I Know I Don't Look Sick

Many chronically ill patients have recently written articles titled, "But You Don't Look Sick." I get it. And now, I feel compelled to add to this theme in my own words. Why? First off, to clear up some confusion surrounding my story, and secondly, to use my voice as an advocate for those suffering with disease, day in and day out.

Lately, my days are filled with pain, nausea, and fatigue due to multiple malfunctions in my body. This is probably not news to you, as I have used words to describe these maladies on more than one occasion. Common to all of my symptoms is this: Aside from an insulin pump that makes an occasional surprising appearance to the world out the top of my shirt, and those times when close friends see me hunched over in agony on the street, evidence of my ailments and symptoms are hidden beneath my skin. Unless of course you see me naked. (And THAT's not happening!) Then, you would see some war wounds in the form of surgical scarring.

But what you do see is this: I am not bleeding. I am not missing a leg. I am not in a wheelchair. I do not have an oxygen tank.

You will also notice that usually I am wearing makeup. I am in a dress or heels. My hair is done.

I can't tell you how many days just the thought of that beauty regime overwhelms me. The time and energy it takes to "not look sick" is exhausting. But for me, this is one way of hanging on to the health I still have.

Why not wear some makeup? Why not wear stylish clothes.  I can't very well walk around naked, can I? So they might as well be fashionable.

I love making memories - with Don, my family and my friends. Even with strangers.

So...

On days I am capable, we explore the world and soak it all in. This does not mean I am not symptomatic. This means, I have a bit more energy than the day before spent in bed, to get up, get ready, and fight against those symptoms with all I've got. I haven't much endurance or much strength, but my eyes can still see and ears can still hear and my fingers can touch and my mind (and my camera) can capture life as it unfolds.

And.

My face still works (yay!) so I can smile as I (and the camera) take it all in.

Of course the pictures you see of our travels online are goofy and fun and posed and romantic. Do you really want to see pictures of me down for the count in bed? Or at yet another doctor's appt. getting tests? Of me hanging over the toilet bowl retching? I doubt it. Let me spare you that.
I want you to see me as happy and fulfilled, because aside from a very difficult health situation, I am.

And if you think me to be vain, so be it. For me, looking my best is a mental exercise in fighting my disease and not giving in. I emotionally feel better when I look my best. And if I can't physically feel better, why not take the emotional gain?

So here's my point: Please don't assume that if a chronically ill person looks good, they feel just as good. Please don't put unrealistic expectations on their capacity to join in on physical activities, as simple as they may be for you. Never try to guess how a person with chronic illness is doing. If you care, just ask. And know that some days the answer will be bleak, some days vague, some days more positive than reality and sometimes, it will honestly be good.

Yes, I know I don't look sick.

I'll take that as a compliment.

It's Okay Not To Be Okay: A Special Tribute to Megan

I have a friend. Well, more than one I think. But this one is special and today I want to honour her.

You see, sometimes it is not all about me. (Usually, actually. But in this blog it tends to be.)

Today, I want to talk about my friend Megan.

Megan like me, suffers from chronic illness. Many of our symptoms are the same, although the causes are somewhat different. Megan suffers from Lyme disease, and more recently has also been diagnosed with gastro paresis.  Reconnecting after many years, it was uncanny to realize how similarly we suffer. But that is not why Megan is so special.

More often than not, intense pain and fatigue make it impossible for her to get out of bed. If she is able, sitting and reading a book translates to a full body workout. Leaving the house is saved only for her very best days or, her very worst meaning a trip to the hospital. She has been the real-life main character in a bad hospital scene way too many times. Hard gurneys, curtained corridors and I.V. drips have been her life’s movie backdrop far too often, especially considering her age. Still in her twenties, health issues should not even be a line in the script, never mind dictating the whole screenplay. 

But that is not why Megan is so special.

After getting a degree, starting a successful career and living on her own, Megan has been forced to move back in with her (very supportive) parents and quit work. Not only is she sick, tired and lonely, but has lost her independence completely. This has been a huge setback for an intelligent and strong woman such as herself. She’s had no choice but to ask for help and take it.

 But that is not why Megan is so special.

Let me switch my focus from the negative to the positive. Megan would want that.

And that is why she is so special.

No matter how many times she throws up, or is the throws of muscle pain, Megan can still light up a room with her smile.

That is why Megan is so special.

When Megan sits alone in her room, what does she do? She posts motivational quotes to the world, and applies them to herself.

That is why Megan is so special.

When the rare occasion presents itself for me to visit her, (the UK is a long way from Winnipeg) it doesn’t matter that she hasn’t the strength to sit up in her hospital bed. She still asks how I am.

That is why Megan is so special.

The miniscule amount of energy she has to spend in a day is focused on her biggest priority: Love. It oozes from her delicate pores and grows with the strength of a tidal wave, washing over everyone she comes in contact with.

That is why Megan is so special.

Determination must be her middle name, since she never gives in; never gives up. It defies all negativity.

That is why Megan is so special.

Megan has not only not lost faith, but gained it along the way.

That is why Megan is so special.

 Megan, so many days I just want to get on a plane and go hold your hand, sit in silence and just blanket you with comfort. At the same time, I would soak in your essence and emulate your spirit. I can’t tell you how many times I’ve said to myself, “If Megan can hang on, I can get through this.” Yes, at the risk of sounding clichéd, you are an inspiration; a hero.

Thank you not only for your strength, but also for your honesty. To quote Jesse J: It’s okay not to be okay. I hope you “get” that. I think you do.

 So to whoever is reading this, please honour Megan by recognizing her brutal struggle and her amazing attitude and learn from it. As a tribute to her, hold a hand if needed. And please, if you are also chronically ill, remember Megan. She’d have your back and so would I. That’s two people who already care.

Hang in there peeps. If I’ve learned one thing from Megan it’s this: You are stronger than you think.

Oh and also...

It’s okay not to be okay.

Diabetes, You're a Pain in the...Guts!

 

So I saw a new doctor yesterday. I’ve lived in the UK for 21 months and have been to 11 doctors in that time. Some people collect coins. Apparently I collect doctors. But I digress.

This new guy, Dr. Farmer, is the cream of the crop.

45 minutes of compassion, explanation, understanding and respect gave both Mr. Man and I hope. The fact that this new doc feels only 2 or 3% improvement in my symptoms would be a success considering my history, was still enough to encourage me given this last year. And his scientific breakdown of what is happening inside me not only validated my reality, but empowered me with a comprehension that I never had before.

He explained my pain this way: "Normally, a hot shower feels good on the muscles. It is relaxing and soothing. But if you have a sunburn, just the pressure of the water, even if not hot is painful and too much for the skin to handle. That is what the diabetes has done to your nervous system. Everything is hypersensitive to pain."

Yes! That made perfect sense to me.

And as if he knew I was a musician, he gave another analogy: "It’s like the gain has been turned up way too high in the mix."

Did you know that science has proven if you have pain in one area of your body, other areas with pain will be intensified? Wow. That was new information to me. Mentally scrolling through my problem areas, I realized it’s no wonder I hurt so much.

He also explained that the pain in my guts is due to easily inflamed intestines with poor healing abilities. He went on to say this applies to all areas of my body thanks to the Betes. My frozen and inflamed shoulders are a prime example of this.

Dr. Farmer is working on cutting edge therapies, medications and technologies.

“Hang in there Susanne. New treatments are on the horizon for gastro paresis.”

Thank you Dr. Farmer. I’ll take your 3% improvement and your gift of enlightenment.

You gave me more than any pill could ever do.

You gave me Hope.

I've Got Skillz!!

One of my surgeons, Mr. Farmer (That's how you refer to a specialist in the UK) greeted us, told us to sit down, looked at Don and said, "She was amazing! I mean, totally amazing! Some colonoscopies last five minutes and hers went on forever. I thought it would never end. One of the toughest I've done. And she did amazing. (Looking at me,) You were amazing!"

Okay, so I don't have a book published yet and I haven't sold a song but this just goes to show...
I've got some SKILLS, baby!

I can rock a colonoscopy like no other!

I mean, what more could a girl ask for?! Everyone deserves to be good at something, and now I have no doubt about where my talents lie. That colonoscopy was a gift! I will forever go down in Mr. Farmer's history as Colonoscopy Superwoman!

I know my calling. I have finally arrived. Satisfaction is mine. My quest for success is complete.

Wait...

I still wouldn't mind a book deal. Any offers?

P.S. Yes, my birthday is coming up. Now you know what you can get me. ;)

Colonoscopy Deluxe: Trapdoor Knickers and All

I had another one of those days again.

The kind of day when you can’t get motivated, you ask?

Nope.

The kind of day when you drop everything you pick up, you think?

Nope.

The kind of day when you just want to curl up under the covers and hide, right?

Nope. Well, upon reflection, yes. But nope.

My “another one of those days” was hospital procedure day.

A colonoscopy to be exact.

This test was conducted at a private hospital so after settling into my room, ordering room service and taking a soapy shower in my ensuite, I wrestled my way into my two gowns, one closed at the back and one at the front for double bum flashing protection and jumped onto the bed.

A nurse came and took my novel-length medical history and concluded with, “You’re third on the list so you should get called around half-ten.”

Well, then it makes perfect sense, that our appointment time was 7:30.

A few minutes later, the nurse returned with some deluxe items: White as snow slippers, still in the package, and knickers (underwear, pants, you pick your word) with a built in hole in the back with a Velcro trap door. Sweet! They might as well put a bull’s eye on my back end with an arrow saying, enter here. I mean, seriously. If you want me to cling to any dignity, I’m not sure these nifty little undergarments are the way to do it. Did I mention they were made out of reusable shopping bag material? They were just such a treat!

While we waited, I shifted around in the bed trying to get comfortable, only to hear mouth say, “Oh shoot, I just blew out my trapdoor,” before my brain registered the words. I dare you to try to casually work that one into a conversation at your next dinner party.

At one in the afternoon they finally came for me. And can I just mention...I hadn’t eaten for 41 hours at this point. (With the exception of some much needed sugar tablets.) As my friend Beth would say, and to put it mildly, I was a little Hangry.

I dutifully followed the nurse to the theatre to be met by my surgeon, Mr. Farmer, dressed in a plastic apron. Umm...I have no words.

“I’m just going to give you some oxygen in your nose in case you fall asleep and it drops,” the nurse said as she hooked me up.

Now. This is the part where hangry hysterical laughter spews out of my face. FALL ASLEEP?!?

They don’t know me at all, do they.

No, the two sedatives injected into my delicate hand were as useless as a shopping bag with a trap door. Speaking of...I loved it when the doctor in the plastic apron said, “Let’s just get this door open,” as he put me in position. Loved. It.

And sleep?? 300 feet (okay maybe not quite that much) of hose jammed up to my throat through my intestinal passageway preceded by some torturous medical blow dryer to fill me like a balloon does not exactly speak, lullaby. As usual, I am never a simple case and one particular corner in my bowel was not cooperating. With the combination of flipping me around side to back a few times, and a nurse applying external pressure (Oh yay! More pressure!) on my abdomen, we finally got around it.

“Is that what I think it is?” Mr. Farmer said to the nurse after 45 minutes.

“I think it is,” was her reply.

Umm, I’m right here. This is not how I want to find out about the cancerous tumour growing deep inside me. Not with the tube still jammed in places where nothing should ever be jammed.

“Yup. It’s the end. We’ve gone as far as we can.”

Oh. So about that cancer?

“I see nothing ominous like cancer so I will see you next week to discuss options.” I guess he read my mind.

The cool thing was, I got to watch the screen and see the whole thing. Except for the green parts, I’d say I’ve got some pretty good looking innards, if I do say so myself.

“You are an amazing patient. You did so good. You can come back every day!” the nurse said genuinely meaning it.

Umm...

Thanks for the compliment but I think I’ll pass.

A friend with four children told me she’d rather give birth to a 20 pound baby without an epidural than have another colonoscopy. Enough said.

I just realized that some of you may have a colonoscopy in your future. Don’t let this put you off. The drugs do work for some people and not everyone has a stubborn corner to get around.

And good test results are worth the agony, er, I mean, discomfort.

Plus, don’t forget the extra special bonus...

Those fab knickers. ;)

Poo-Pourri: the Gift of a True Friend, Obviously

A true friend laughs at your jokes, even when they suck worms.

A true friend lends an ear, a shoulder and a tissue to wipe your snot and streaming mascara when you need a good cry.

A true friend always has your back donning her Wonder Woman cape whenever necessary to save your day.

A true friend buys you Poo-Pourri.

Poo-pourri?

Before I describe this magical Daisy Doo product, let me remind you why this is a super-powered gift.

In a nutshell, I have Type 1 Diabetes and as a result of 31 years of the Betes, have collected some complications. The top three would be Retinopathy, Neuropathy and Gastro paresis, the latter being most troublesome at this point of my life.

My symptoms of nausea/vomiting, inflamed and angry intestines, stomach cramping and severe constipation thanks to the LAZIEST bowels of all time, have deemed it necessary for countless tests, probes and recently, a surgery of the bionic sort. I now have “Terry” (Enterra) the implant embedded (well, flopping around actually) in my belly wall as a sort of stomach pacemaker to help things move along. Needless to say, my quality of life in the health department has been sucked into my neglected crapper as of late.

Enter Erica, a true friend.

We don’t typically exchange Christmas gifts, so when she pulled out a tiny and delicately wrapped package this past December bow and all, I sputtered a lame, “But I didn’t get you anything!” (Speaking of sucking worms!)

“No need,” she assured me. “And you, my friend, need this gift!”

I’ve never been one to slowly peel the tape off and save the wrapping paper, much to my grandma’s chagrin. No, I’m more like a lion ripping open a leaking package of bacon after a 60 day fast when it comes to opening gifts. (My vegetarian self just threw up a little in my mouth.)

After tossing the wrapping onto the floor, in my hand I held a 49 ml bottle of Daisy Doo Poo-Pourri. (Shoot, it’s over 30 ml. Can’t take it on an airplane!)

“What pray tell, is that?” you ask.

Well as my true super-hero friend Erica explained, it is a spray which you squirt into the toilet bowl immediately before, well, ahem...you know, and the aroma is meant to not only mask the stench of death that typically wafts around the bathroom, but is also said to stimulate action in the first place.

Seriously?

Does it get any more thoughtful than this!?!?!

Now, Erica is no stranger to chronic illness herself, so it’s really no surprise that she came up with this, being someone who "gets" me on a level that many can’t.

But I don’t know where she found it, or better yet, WHY she knew about it. I mean really, who thinks to themselves, I wonder if there is a lovely smelling poo enhancing stimulant that could help a friend in need? I should research that. Yes, I’ll look for a cross between pot-pourri and speed and see what I can come up with. That combination should get her moving.

Oh Erica, how I love you. So what if I’m not cured? At least now my sh..poo smells like wildflowers and honey.

And to all the rest of you, after running out to get your own bottle, as I know you will, don’t get sucked into thinking more is better. I double squirted the first time. That was a mistake. I almost landed head first in the toilet bowl from fragrance asphyxiation.

So, Wonder Woman and the Bionic Woman...

Together, we’re unstoppable, Erica and me.

Or, at least, our sh... don’t stink. ;)