The Problem with Vulnerability...

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...is that I keep forgetting just how much people suck.  Always gets me singing the refrain of this song...

Healing.

Source: http://media.tumblr.com/tumblr_ljmhm3tgxX1qb7qbj.jpg

See that up there?  It's a little crunchy, a little nutty and a little sweet.  

Granola.

Natural.

So it is with how I try to approach my health and diet.

Or, at least I thought it was.  

That is until the point when my digestive system was out of control.  Until the point when I had lost total control of the most basic bodily functions.

And that was when I started telling people "I think I'm going to go see a Naturopath".

For like, a year.

The reaction I got when I would mention this to people was something like, "Yeah, I thought you would have already done that!"  Or, "That's totally something that makes sense for you to do!"

And yet, I didn't make the call.

I knew there was a block.  I knew something was getting in the way.  I only procrastinate when there is a reason, when I truly know that I want something I attack it with enthusiasm.  And so I knew I had to really think it through.

The answer of course is that Naturopaths treat the whole person.  Body, mind and spirit.  They are all connected after all.

This is terrifying.

Being the neurotic person that I am, I tend to not want to let more people than necessary take a crack at my psyche.  It's bad enough that I work with a bunch of folks who can probably guess my entire psychological makeup based on what I share at the lunch table. There is something about being vulnerable that is paralyzing.  You know, since historically, being vulnerable with others has backfired enormously.

I kind of wanted the N.D. to just treat my symptoms the way that a doctor would.  Except with herbs and vitamins instead of drugs.

Once I figured that out, I had a decision to make.  The intake forms were pretty thorough.  Questions about mood.  Family relationships.  Support networks.

I could answer those questions the way I do in real life.  Good thanks, everything's fine!  How about you?

Or I could be honest.  Vulnerable.  Human.

That's the problem with being the pillar, right?  With being the only reliable one in any given group?  If you show your cracks the whole damn system is likely to crumble.

Of course, that's not what the "professional" me believes.  At work I constantly encourage people to show their vulnerability and test that theory.  And in other people's lives the systems don't crumble, in fact they're kind of strengthened.

But the "real life" me acts like it's completely true.  And a large part of me still believes it, to be honest.  I mean, it wasn't that long ago that I had to figure out a way to get a ride home from my colonoscopy. Those who were the closest to me were completely incapable of offering practical support.  And couldn't even figure out a way to ask me how I was doing with everything.  So the need to rely on my own strength is very real at times.

But still.  Here was an opportunity to try something different.  And so I did.

Honest.  Vulnerable.  Human.

It felt pretty ok.  Until the actual appointment, when she started asking me more questions.  I really wanted to take it all back.  And I did, kinda...by minimizing and glossing over things the way I do.

She took some blood samples for a food sensitivity test.  She gave me a list of supplements to start taking (fish oil -- which means that I'm technically not a vegetarian anymore, after nearly 25 years -- and curcumin, an anti-inflammatory that is the active ingredient in tumeric).  

And she told me I should journal about "control".

Actually, on the prescription pad she wrote it like "CONTROL!"

Haha, I guess she figured it out.

Since I hate journaling for real, I hope that this counts.  And maybe also counts as practicing vulnerability?  

It sure as heck is not easy.  But I suspect that my healing will need to be more than simply physical.  

Maybe, just maybe, now's the time.

Update

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I have a mental checklist of all the things I want to be blogging about, but just haven't had the time!  Between the holidays, being sick, and playing taxi driver for my kids, blogging has been pretty low on my priority list.

When I last wrote, it was just after my colonoscopy. Which feels like SO long ago!  Feel free to re-read it again to refresh your memory!   I had my follow up appointment one week later.

My appointment was booked for 9am, which truly is a terrible time for me to book anything.  That particular morning was quite difficult, and my body simply wouldn't allow me to leave my house in time to be punctual for my scheduled slot.  I was only 10 minutes late, but was feeling a great deal of anxiety about this.  I pride myself on being punctual (and if you grew up in my family, where being incredibly -- disrespectfully -- late for everything was the norm, you would understand.  My brother is the same way!) and that is just one more way that this disease causes more stress for me.

So I'm run-walking through the hospital, trying to get to the office as fast as possible.  They call me in, and I go in the little room to wait for the Doctor.  While waiting, I run through all the possible worst-case scenarios in my mind, trying to work through all the possible emotions ahead of time.  After losing my composure at my last appointment and watching how uncomfortable this made the doctor, I was determined not to do it again.

The door opens, and in walks a perky, young, blonde lady who proceeds to sit down and open my chart.

I burst out laughing, I just couldn't help it.

Me: Oh man, did he send you in here because I cried last time?
Her: Huh?
Me:  The doctor.  I cried.  Poor man looked so uncomfortable!
Her: Uh?
Me:  It's ok, you can tell him that I won't cry this time, he can come back!
Her:  Oh.  He's uh, busy, right now...
Me: You sure?  I promise I won't cry.
Her:  Ok, but he's busy.

She went on to say that they did not yet have the report from the doctor who did my scope, and they did not yet have the results from my biopsies.  She asked me if I remembered what the doctor told me after the scope was done.  I told her that he said that the inflammation was 30cms in.  She noted that in the chart and said that she thought the doctor was at the clinic that morning so she would go check with him to see if he "remembered me".

Me: Well, I was the youngest one there by about 30 years, so tell him it was probably the nicest butt he saw that day!
Her: Uh, we don't really pay attention to that...

Then she ran out of the room.

Sheesh, you'd think that butt-doctors would have a bit of a sense of humour about what they do for a living!

She came back with my actual doctor.  He reiterated that they did not have the report, did not have the biopsies.  Then he wanted to talk meds.  He spoke about how up until now we have been trying to get the inflammation under control with topical anti-inflammatory meds.  And how this clearly hasn't been working.  How he's asked me to consider trying Prednisone and that I've declined (my husband has Lupus and has been taking Prednisone for a few years.  I have seen some of the side effects and don't want to go that route if I don't have to).  He concluded that he felt that we needed to move away from topical meds and try systemic meds.

This is very troubling to me.

The options presented were to continue trying to stop the inflammation using anti-inflammatory drugs, but that he felt this would be like "using a wet rag to put out a fire".  His preferred option was to move into an immuno-suppressant.

Then he asked me what I thought.

The tears welled up, but I took a breath and kept them in.

I explained that I really did not want to use the heavier drugs at this time.  That I would take the prescription for the anti-inflammatory, and try that for a couple of months.  I also let him know that I had a consult with a Naturopath in a couple days, and that I wanted to explore that option as well.

He sighed, wrote the prescription, and let me know that was fine.  He said that he felt that the Naturopath would likely have some good options for me, and that he felt that they could work together to treat my disease.  He warned that stress was a likely trigger and that I needed to figure out a way to reduce this in my life.

Overall, I left the appointment no further ahead, but no further behind.  No one has mentioned the "Colitis" word yet, but I'm pretty sure I now qualify.  And I now had high hopes for what would happen at the Naturopath! 

The Final Frontier.

Source

Aren't you excited to read this?

I bet you are.

I'm gonna give you a play-by-play on what to expect should you ever need to have a colonoscopy.

First off, you need to know that the preparation is the worst part of the whole thing.  If you can get through that, it's smooth sailing.  When I had my first scope done in 2011 I was feeling extremely anxious, so I did a bunch of research.  A phrase that stuck with me was that the prep was "an indignity best suffered alone".  

Boy oh boy, is that ever true.

Last time I sent my family away for the evening.  I don't remember what they did, but I have vivid traumatic memories of what I was doing.  I had to drink 2 gallons of water mixed with some horrific powder that tasted and smelled of burning salted plastic.  The instructions I was given were to drink 1 cup of this vile solution every 10 minutes.  

I dare you to try to drink 2 gallons of even your favourite drink that way.

I think when it finally started working it had less to do with the laxative effect and more to do with the fact that my entire digestive system was packed full of this stuff and it had to go somewhere.

It was awful, I was gagging the entire time.  Not having my family witness my reaction to all of this was quite a blessing actually.

This time, I was prescribed a different prep.  I learned when I tried to fill the prescription at the pharmacy that it wasn't covered under either my or my husband's drug plans.  So I had to pay cash for it.  Something about that feels like adding insult to injury.

I was on a clear-fluid only diet after breakfast that morning.  I had to take 4 laxative tablets at 2pm, then mix a sachet of powder with 150ml of water and drink that, followed by 4 cups of any clear fluid over the next 2 hours.  About 6 hours later, I had another sachet of powder to mix and drink, followed by another 4 cups of clear fluid.

The powder smelled and tasted like some sort of artificially sweetened mutant orange tang.  It wasn't delicious, but it was a heck of a lot easier to get down than the other stuff.  Looked disgusting though, and when you stirred it, it got hot for some reason.

My yummy drink.

Although the paper work said it would start to work within 2-4 hours, it kicked in within 5 minutes for me.  Who knows if that's because my system is already messed up.  I did laugh about the instructions in the pamphlet to "make sure you have access to a toilet during treatment".

The next few hours were pretty predictable.  It involved a lot of dashing to the bathroom.  The purpose of the prep is to get your system all sparkly clean so the camera can see what's going on.  So by the end of it, you're passing nothing but mostly clear liquid.  If you've never experienced peeing out of your butt, well, you're not really missing much.

Since the second dose of the drink was taken so close to my bedtime, I had a bit of difficulty settling down for sleep.  But by 1am the worst of it was over.  I slept fairly well, starting to wake at 5am again with needing to use the washroom.

Breakfast was some white cranberry juice, then I could have nothing by mouth until after my procedure at 1pm.  I filled up my time shopping for slippers that I could wear at the hospital.  I ended up taking the bus there, as I couldn't drive myself back after being sedated.

Arriving at the hospital, I start the long waiting process.  They check you in, you wait.  They give you stuff to change into, then you wait.  They call you in to insert your IV, then you wait.  All in all, I waited about an hour.

The worst part of the hospital stuff was the way I was systematically stripped of all of my dignity.  It seems that staff there are not so aware of the experience from a patient's perspective (or maybe if they are, they're just desensitized to it).  I remember feeling this way last time as well.

The worst for me is always the fact that you have to strip down completely when you put on the hospital gown.  I asked before why I couldn't keep on at least my bra, as they were not going to be working anywhere near that area.  They said it was in case there was an emergency and they had to access my heart.  Ok, I guess, but the level of dignity I would feel if they just allowed me to keep that one article on would have made a huge difference.

Next is the fact that you're supposed to put all your clothing and belongings in a giant plastic bag, which you then tote around with you from waiting room to waiting room.  The idea is to ensure that you have all your stuff with you the entire time, so it stays safe.  But it's just another subtle message that can be interpreted in a dehumanizing way.  Your stuff is trash.

This is *my* trash!  Hands off!

After the waiting, when it's your turn to see the doctor, they call you into the room.  There's a stretcher, some flat screened monitors, a table and some other medical stuff.  What looks like a hose is hanging on a hook (it's not a hose of course, it's the scope).  They ask you what procedure you're there for (haha, wouldn't that be a surprise if you made it all the way to that point and then they accidentally gave you a colonoscopy!), and then settle you on the stretcher, knees up against your stomach.  Your gown is nicely arranged around your butt, exposing it to everyone in the room (a doctor, a nurse, and a resident in my case).  Then you get the meds (they use 2 different kinds, explained to me as one to make you sleepy, one to make your memory blurry).

From what I understand, many people fall asleep and don't remember any of the procedure.  Me, well, I'm way too stubborn for that.  I have a bit of an irrational fear of people doing weird things to me while I'm sedated, so I fight it like crazy.  I gave them the heads up this time that I wanted to stay awake, so I don't think they gave me as much as last time.

Suddenly it's all happening.  I watch it all on one of the monitors.  As the scope loops its way through my intestines, it reminds me of my babies rolling around in the later stages of my pregnancies.  Which isn't a bad feeling, really.  At some point I turned my head and sighed.  The doctor asked me if I was bored, and I'm not sure what I answered but it struck me as a funny joke. Once in a while, when the scope hit a place where the curves are sharper, there is some pain.  I make faces, the nurse notices and pushes on my belly to help guide the scope.  They take biopsies (which is a bit surreal to watch) and then it's over.

I ask some questions about their findings, the doctor says that there is inflammation up to 30cms in, a big difference from last year when it was only 5cms in.  I'll get more of an understanding at my follow up appointment next week, as well as (hopefully) the results from the biopsies.  So it's not my imagination that things are getting worse, something that feels validating and discouraging all at the same time.

But now it's done, and it's time for planning for next steps.  I have a consult with a naturopath next week as well, and I'm hoping that something they can offer me makes more sense than just taking different and stronger meds.

Until then....business as usual.

Surprise!

I wish that I could tell you all that I've not been writing here because things have continued to be great for me.

They haven't.

I haven't been writing here because I've been CRAZY busy.  Maybe also because I get tired of spending so much of my focus on my bathroom habits. 

But whatever.

So, long story short, things are back to crappy.

(Side note, I've really been realizing how many scatological terms I use in every day conversation.  "What a crappy day", "This is crap", etc.  Makes me wonder if I was destined to have this condition all along, or maybe that I "put it out into the Universe unconsciously" like they talked about in that weird book "The Secret".  Food for thought.)

Not as crappy as they were in the summer time, mind you.  I'm managing pretty well, despite making many more trips to the bathroom than ought to be possible given the volume of food that I consume.  I need to plan my driving routes carefully in order to be near enough to a gas station or coffee shop in case I need to stop half-way to my destination (which I generally do, especially in the mornings on my way to work).

But mostly I wasn't minding because I knew I had a specialist appointment coming up in December.  I don't know what I really thought would happen at that appointment, maybe that I'd tell him about my awful experiences throughout the summer and he'd say something like "OH!  Well, I know exactly what will help!".  And then write me a prescription for a spa day or something.  

Clearly, I hadn't really thought it through.

In reality, what happened went like this:

Him: Hello, how are you?
Me: Good, thanks.  You?
Him: Good thanks.  So how have things been since we last saw each other?
Me: Awful. Booo hooo hoo hoo hoo hoo hoo!!!

Well, that took me by surprise!  Where the hell did all those tears come from?  Not the dab the corner of your eyes demurely with a tissue kind of tears, but the full out running out of your eyes and nose kind of tears.  The poor man, he didn't look like he had a clue what to do with me so he just started avoiding eye contact and leafing through my chart.

After a few minutes of clarifying questions from him, a few minutes of swallowing sobs from me, lots more leafing through my chart and several confused sounding "hmmmmm"s, he comes up with this:

Him: Well, this is concerning indeed.
Me: (nodding)
Him:  Your last scope was in June of 2011?
Me: (shrugging and nodding)
Him: Well, I think we need to do another one.
Me: (nodding)

(Why the hell am I so damn agreeable?!!)

Him: (nodding)
Me:  Um, do you (sniff) have a sense for (snerk) time frame?
Him: Well, I can check on that.
Me: Last time I waited for a year.
Him: A year?
Me: Yep.
Him: Well, let me check the scheduling and we'll see what we can get done.  But I am concerned so I think it will be sooner than a year.

He leaves.  I try (and mostly fail) to compose myself.

A few minutes later he returns.  

Him: Well, it's not a year...
Me: (echoing stupidly) not a year...
Him: How about Thursday.
Me: Thursday?  Like in 2 days?
Him: Yep.  And then we'll get you in for the results before the holidays.
Me: (silence, while I'm trying to wrap my head around what this all will mean for my schedule.  And then I realize...) I don't know if I can find someone to pick me up.
Him: (silence)
Me: Umm, never mind, I'll figure it out (oh damn, there are the tears again)
Him: (back to avoiding eye contact and rifling through paperwork) Ok, well here are the forms, take them to the reception and she'll book you in.
Me: (back to being agreeable) Ok.  Sorry for crying.

And then I left.  But I was still quite fragile until almost the end of the day.  Not because I have to have the scope, I've done that before.  But because it was such a rush.  Because it took me by surprise.  Because maybe things are worse than before.

As always, I try to find an angle that will make me laugh about the whole situation.  At work, we have an annual staff appreciation day.  I often laugh about how it's positioned as a "mandatory staff appreciation day", like they need to make it mandatory for the staff to show up or something.  Anyway, I joke about how far I would go to get out of it -- just on principle.  Like "Ha!  I won't allow you to force me to be appreciated!"

This year?  It falls on Thursday.  

Take THAT system, I WIN!!

Attacked!

See this?

It's Pad Thai.  Delicious gluten-free, vegetarian Pad Thai.  One of my favourite lunches from the Thai place down the street from my work.

Until now.

Because it attacked me.

Due to the nature of this blog, it would make sense for you to be imagining that I ended up with a nasty case of the runs after eating this.  But you would be wrong.

Anyone who knows me well knows that in the course of trying to figure out what the heck was going on with my digestive system I eliminated a whole whack of foods from my diet.  I was desperate, and really wanted my symptoms to ease up.  Plus, I do trend toward the "granola" end of things, and the idea of managing disease through better nutrition was appealing to me.

One of the first things to go was gluten.  Yeah yeah yeah, I know you're all rolling your eyes.  Gluten-free is the big "trend" nowadays, and everyone is jumping on the bandwagon.  I get it.

And yes, I did get the blood test done.  And yes, it came back 'inconclusive' (whatever that means).  Honestly I don't care if I have Celiac disease (I don't think I do) or gluten allergy, or intolerance or aboogabooga.

All I know is that a whole host of seemingly disconnected things cleared up almost immediately after eliminating it from my diet.

The way I describe it to people is that it was almost like I had a low-level inflammation throughout my entire body that finally disappeared when I stopped eating gluten.  I had terrible acne.  Now?  Mostly gone.  Any cuts/pimples/rashes that I got would take forever to heal.  They would just keep filling up and draining.  Filling up and draining.  Now?  I heal like a dream.  My digestive symptoms improved by about 80%. 

I was sold.

Eliminating gluten was not terribly difficult for me, mostly because I was already in the habit of doing a 6-week "cleanse" twice per year.  During those weeks I would go without wheat, dairy, sugar, caffeine and alcohol.  Even then I noticed a huge deflation of my belly-bloating, although I didn't attribute it to gluten specifically.

So back to the Pad Thai.

Even though I ordered a gluten-free & vegetarian Pad Thai, about 10 minutes after eating it I knew something was up.  I should have double checked when I picked it up.  Especially after realizing that they'd messed up another part of our take-out order.  I should have maybe spoken up when they placed the non-gluten-free spring roll briefly in my take out container (although I tend to not be so sensitive to the cross-contamination like some others).  I know that I was negligent in this area.

But I didn't.  And I ate the ENTIRE thing.

I went back to my desk and started gathering papers for my next 2 meetings.  I noticed that my lips were feeling funny.  Not really tingly exactly, almost numb.  The feeling spread.  To my entire face. 

Then I started feeling light-headed.  The closest that I can describe it is drunk.  My whole body was buzzing, and I could not think straight.  I started having to check and double check to make sure I had everything I needed for my meeting.

I drove to my meeting but based on how hard I had to focus on the road, I probably shouldn't have.  The pounding headache started about half-way home.

I got home and just wanted to sleep.  Woke up hung over.  Then the gastro bleeding returned.  Three days later I started breaking out.

I can't explain this.  Although I'm a bit "granola" like I said earlier, I'm also a huge skeptic.  Nothing that I've read from a legitimate source has given me reason to expect this kind of reaction.  And if I was the one reading this story, I would probably think that it was an exaggeration.  So I don't understand.  But it's happened before, on one other occasion -- although in that case I had also consumed half a glass of wine so I wasn't as confused about the drunk feeling.

So if you've got an explanation, I'd love to hear it.  Or if you've got a similar story, please chime in.  It would be nice to know that I'm not alone in this.

A Bit of Normalcy

See this view?

If I leave my house and walk for 7 minutes, this is where I end up.  Who says Hamilton's a "dirty city"?

My kids love to walk, hike, just be outdoors in nature.  So do I, although I have a hard time not having a "destination" in mind (What do you mean 'just go for a walk'?  Let's walk somewhere!).

Sadly, with all the crap (heh) that's been happening with me, we have not had a chance to see this view at all this year.

Until today.

You may have noticed (all 10 of you that read this blog, haha) that things have been a bit quiet around here.  I'm not sorry about that.

Because I've had nothing that was colon-related to write about for more than a week!!

(In case you're sad that you haven't had anything brilliant to read in that time, you should also join me over here where I've been writing about non-colon related things!).

Today was the first day in over a year that I trusted my body to be away from a bathroom for any length of time.  Truly, it was only for about an hour.  But it was glorious.

I didn't even carry around my "emergency pack".  No toilet paper, no spare underwear, no moist towelettes, nothing.

Me and my youngest.

Me and my teenager.  She's taller than I am and not done growing!

It was nice to just be silly together.  We skipped, we climbed trees, we spun around in circles...

 It was maybe the most perfect way to spend our Thanksgiving Sunday.

I don't know how long this reprieve from symptoms will last, but I plan to make good use of the time.  I'll pop by now and again to update, but unless something drastic changes I'll be spending the next few weeks focused on rambling incoherently over here!  Thanks for coming along on the journey!!