"I am stronger than depression and braver than loneliness and nothing will ever exhaust me".
-Elizabeth Gilbert (Eat, Pray, Love)

Saturday, February 24, 2018

Glorified Gongshow

I recently did an interview with CBC talking about my situation and organ donation. I had a few people mention that I have a tendency of making it sound not as bad as it really is. Itʼs true, I know I do that. I donʼt like pity - I donʼt know how to handle it, and to be honest, while my situation absolutely sucks and is terrifying, sulking isnʼt going to get me anywhere. So, yes I am angry and terrified but Iʼm much better at doing something about it and moving forward than I am playing the victim.  Plus, most people don't actually know what to say to me when I do talk about it (really, there isn't anything you can say) and it's awkward for everyone (I tend to find human communication a little awkward to begin with, so throw some pity in there and I'm really uncomfortable).  With all of that being said, I'm always happy to answer questions and appreciate everyones support and positive vibes.  

On another note I have made the final decision to go ahead with the fistula. I went back and forth between the fistula and the catheter, and after talking to the most wonderful, patient nurse about my options (again), the fistula is, unfortunately the better of the two super crappy options. The risk factors and longevity of the catheter pose too high of a risk.  There is a risk for infection, blood clots and some major complications if one, or both of those things happen.  She did mention that if it is absolutely vital for my wellbeing, they can reverse the fistula once I get a transplant. The idea that it wonʼt be in my arm forever is enough to make it bearable.  At least with the fistula, I don't have to modify much in my life - showering, riding, working out all stays the same.  I have a surgery date set for mid July.

Sunday, February 11, 2018

No More Donuts

I want to start off by saying thank you to everyone who has offered their kind words and positive vibes these last couple of days - they've been tough.  If you asked me how I was doing in person, you would have got the "I'm okay" response.  I don't know how to reply any differently, I guess it might be my way of trying to convince myself (or, you know I have issues with being vulnerable, cause I'm a control freak...that's an issue for another lifetime I think).  The truth is, I'm struggling, but I don't know how to do that.  I do know how to buck up, get my shit together and move forward - so that's what I'm doing.

After talking to a couple of resourceful clients and doing a bit more research I have started to reconsider the catheter option for dialysis.  I don't know if I can mentally handle having the fistula in my arm forever.  If that was my only option, sure I'd make it work but between the timeline on the fistula and the two needles three times a week, it's looking like a bigger commitment.  There is a lot I don't know about the catheter still.  When I went to the consultation I already had it in my head that I was getting a fistula, so I didn't listen as well as I should have to the catheter-talk.  I made another appointment with the nurse to do a do-over appointment to get all of the information on both options again in order to reassess properly.

Wednesday, February 7, 2018

Well F*CK

This has not been my favourite week.  Yesterday I met with the surgeon who will be doing my fistula for dialysis access - she was great, I really liked her and her team.  What I didn't like (HUGE understatement) was learning a bit more about the two options for dialysis and what the rest of my life is going to look like.

First we went over a few things about the fistula that I didn't know:

1) THEY F*CKING LEAVE IT IN YOUR ARM - FOREVER! I have NO idea why no one has told me this yet! Once it's there - IT STAYS! I assumed (never, never assume) that once I got the transplant, they would put my arm back to the way they found it.  This is not correct.  They do (of course) have good reasons for it:

a) They don't necessarily insert anything to create the fistula, they simply merge a vein and an artery to create an access point for dialysis, so it's not like they can go in and take out the tubing, or reverse it.

b) There is always the chance that I will need dialysis again - even if I did get the transplant, there is always the risk of rejecting the kidney, in which case I would need dialysis again; and/or, eventually in another 10-15 years when the 3rd graft (transplant) goes kaput I will already have that access instead of having to go in again to make another one.

2) In order to hook up my fistula to the dialysis machine (THREE TIMES A WEEK), they poke me with two, TWO needles into the fistula.  Two needles into my fistula...three times per week...potentially for....years - SUPER! HONESTLY?! That SUCKS!  Think of the scar tissue that is going to build up in my poor arm!

I should mention that at this point in the consultation I had this really funky giggle going on, in addition to actually saying the word f*ck a few times to my surgeon - she may think I'm insane but kept her judgement to herself nicely.

It was also at this point in the consultation that I asked her why on earth anyone would pick a fistula?!  It was at this point that she went over a few points about the catheter option:

1) The catheter gets inserted into the chest and connects directly to your heart (umm, yikes).
2) The risk of infection is higher because it sticks out of the skin.
3) YOU CAN'T SHOWER, or go swimming, or get it wet (so hello sponge baths...)
4) Sometimes they can close off and you have to go to the other side, this becomes dangerous to loose blood flow so close to your heart)
5) Scar tissue in the area seems like a bad idea to me

These are my two options.  Seriously.  Seriously.  Like honestly.  Snake in my arm for the rest of my life, or not showering, for you know a few years.  Getting poked in my arm twice per week, or not riding.  So, as absolutely ridiculous as it is that THESE are my ONLY two options, the fistula is still a clear winner in my mind (if you can even call it that).

There were lots of tears (and evidently donuts...) yesterday, but I'm slowly working through yet another mental setback.  I was saying to my mom today I really wish they had just told me ALL of the bad news at once so I had time to wrap my brain around it and get over it.  I feel like every time I get myself pumped up about needing to do this they tell me something else that is just brutal and I have to get myself back up again.

My doctors have been great about coordinating the fistula surgery with my schedule.  It will be at some point between June-August.  My plan is to take that week off work and take my dog up to my Aunt & Uncles place to recover by the lake - might as well enjoy the forced time off.

hey Hoits - hope you don't mind the self invite - Harlow & I (and maybe Wes & a sister) will see you then! ;)      

Wednesday, January 31, 2018

O +/-

I need a kidney!  You have organs!  

Interested in getting tested to see if you are a potential match?  

You can started by emailing livingkidneydonation@lhsc.on.ca 

Love & Gratitude! 

Why Me?

I hear a lot of "why me" comments throughout the day.  From clients, from friends.  Inconvenient, sometimes earth shattering things come up in their life and there is always some form of why me?

In my opinion, there are two main categories of why me:

1) I like to refer to the first one (and unfortunately, usually the most common) as "fuck me, this can't be happening to ME".

2) Why Me? What is it I am supposed to learn from this?  How come out of all of the people in the world, this particular circumstance is occurring in my life?  I am not suggesting that our entire lives are mapped out for us, I strongly believe you make your own outcome - however; I also strongly believe things do happen for a reason and if you are paying attention there is an incredible opportunity to grow into a much better human being.

Let's go back to the first version of "this can't be happening to me" for a moment - you see the problem with that statement is it implies that you would prefer that situation to happen to someone else.

My situation SUCKS - big time, but I would NEVER, EVER, EVER wish this upon someone else.  My situation SUCKS, but I can handle it.  

I don't want to have to go through with another transplant, or dialysis, or any of that shit, but I know I can do it and I will come out the other end a stronger person because of it.  For some reason, I am supposed to do this again, again.  There is still something I need to gain from this experience.  So, after some serious soul searching, and having conversations with whatever ruler of the universe was listening, I've come to a place where I can continue to look at this situation with an open mind.
I am open to growth; I am open to support; 
 & I am open to making the best out of a very inconvenient reality.  

"I know God won't give me anything I can't handle.  I just wish he didn't trust me so much" 
- Mother Teresa      

Sunday, January 28, 2018

More About Dialysis

For those of you who have been asking how exactly a fistula and dialysis work, here is the best link I could find to best explain it all!


Appearances, Baby

Throwback to beautiful Bowen Island. 
Growing up we had a cat named George.  A few years after we made the tough decision to put him down, we got two new kittens.  It wasn't until we got the brand new shinny kittens and started looking back at old photos of George that we got the whole picture of how OLD and ghostly he looked.  He didn't seem that bad because we were used to him - sure he occasionally fell off the couch and took awhile to wake up again, and he was really just skin and bones, but he was George!

See where I'm going with this?

I was looking through some pictures today and realized how good I looked a few years ago (yeah, yeah - I look wonderful now - thank you).  I was strong and rested and all fresh- faced.  It got me thinking that maybe it is time for dialysis (I already knew that, but now I KNOW that.  I know my doctor is on top of things and I trust him fully, it just takes me a little longer to come to the same conclusion myself).  With dialysis helping my system function, I'm hoping to be able to do a bit more of what I used to be able to do.  I'm still able to do a lot, sometimes more than most people without kidney issues, but I used to be able to do more and I looked good doing it (wink-wink).

I've also started to come to a better mental place with the idea of a fistula and all of it's grossness.  I don't gag quite as much as I did previously.  I had the idea that I was going to need to get more long sleeve shirts to cover my arm.  I've recently decided that I do not need to cover my arm to make it more comfortable for other people - they can deal.  I've decided to just go ahead and rock it.  There is a good chance I am going to be on dialysis for awhile and I am not going to keep my arms covered for the next however many years.

This is my reality and I am going to rock it.    

Wednesday, January 24, 2018

Go Time.

Taken by my sister Courtney! @courtneybrettphotography

So I just got back from my latest clinic visit.  All of my numbers are ever so slowly creeping up (nothing was super frightening, but obviously nothing is getting better either...).  We increased some blood pressure meds, added an additional calcium supplement, and actually decreased the amount of injections I will take for my hemoglobin (it was too high for the first time in my life).  I FINALLY got my TB test done which means I can be added to the transplant list.  This also means I can potentially get a call at any time saying they have a kidney for me and I will need to just drop everything and go. Talk about inconvenient (that part doesn't bother me as much as I thought it would - maybe because I have so many other things that can bother me at the moment, this one doesn't seem that big - who knows).  I just want to get it over and done with! It is not likely that I will get a call any time soon; it could be years before there is an appropriate match for me.
Which brings us to dialysis.

My doctor is leaning towards inserting the fistula sooner rather than later (gag) because it can take awhile before it becomes useable.  There is also the risk that the fistula won't take at all and they will have to try another site.  It is a minor procedure that I will need to take a few days off of work (and riding) for.  But once it's in, I should be good to go.  If they aren't able to make the fistula work, I will need to get the PC catheter inserted to my chest (double gag).  This does not mean I am starting dialysis, just that it's coming.

I am kind of having an "oh yeah this is happening" moment.  Not that this hasn't all felt very real yet, but it doesn't get much more real than having to live with gross tubing in your arm - blah.  I am however feeling incredibly fortunate for all of the love and support I have in my life.  It's an amazing thing to have numerous people I can call and have them all be able to screw my head back on straight (not an easy task, I can be a difficult person to manage at the best of times).  So thank you all for listening and offering support - it's making it all much more manageable right now.    

Tuesday, January 2, 2018

It's Not All Doom & Gloom

Today was a beautiful day!  I watched a breath-taking sunrise on the way to the barn where I spent 5 hours filling my heart to the brim with pony love.  On the way home I enjoyed the sunshine pouring into the car while I stopped and got a delicious coffee from one of my favourite local shops.  I was able to spend the rest of my day doing what I love teaching Pilates in my bright & happy loft.   

I have a lot of shit on the go, but days like this - so good for the soul! 

Monday, January 1, 2018

Ain't No Rest for the Non-Functioning Kidney

Happy New Year!

It is hard to believe that we have entered into the first day of 2018.  This also means I am back to work after an uneventful, restful (exactly what I needed) week off.  I had some time with family, friends and the four-legged loves of my life, and I was reminded that as much as I need more alone time than the average person, being around people can be a really good thing too.  It's challenging when you work with people all day.  I have the BEST clients I could ever ask for, but I talk to people ALL day!  It's hard to want to talk about things to friends and family at the end of the day because I'm so tired of hearing my own voice.

It's one of the major reasons I love my animals so much.  We have full conversations and yet they have never spoken a word to me.  There is still such a deep connection and clear understanding of each others needs and requests.  Once you learn to respect each others boundaries, it's a very rewarding relationship.  This is also why I find myself DYING to get out to the barn tomorrow after we had a couple of weeks off for Christmas.  Horses & dogs don't judge.  They don't care if you have a few extra pounds from the holidays, if you have make up on, or what brand your clothes are.  They might hold a grunge (if you don't believe me, you clearly haven't met a mare), or not gel with your energy, but they never judge!  I (like most people I think) always tend to be my own harshest judge.

I have high expectations in regards to my work ethic, performance level, etc.  As a result, I tend to be quite hard on myself when I don't meet those expectations.  I am slowly improving on this.  I was expecting to be feeling rested and ready to get back to work after having a little over a week off and was having a hard time not being disappointed that I wasn't completely pumped to get back at it.  I LOVE what I do, I love the people I work with but I have kidney failure and there is no amount of time off that is going to make me feel like a million bucks at this point.  It's a hard truth to handle for a perfectionist.

I've also been trying to find a happy place with my blood pressure meds.  Whoever said you can't "feel" high blood pressure clearly never experienced high blood pressure.  It's a terrible headache right in the back of your skull.  I've noticed for a few weeks that it's been getting worse, so after consulting with my doctor I increased my evening pill a bit to try and manage it.  The problem is blood pressure meds and I don't typically get along.  I'm pretty sensitive to the side effects, including a bit of dizziness (manageable) and water retention (SUPER annoying).  My osteopathic treatments have been working a miracle at keeping the fluid moving so I don't get too puffy, but with Christmas break I missed last week and am feeling the results.  I'm puffy around my ankles, hips & collarbones; plus I can feel structurally I'm all wonky.  It just goes to show what miracles they are working with weekly treatments.  I am forever grateful I found them!

I have clinic in a few weeks and will see what the numbers look like.  In the mean time, I will just keep going my thing and just try to do the best that I can, while still making time for the things that give me purpose, joy & light!  


Monday, December 18, 2017


A few weeks ago I visited the vein clinic to get an ultrasound of my veins done to see if any were a viable option for a dialysis fistula (when the time comes).  The alternative to a fistula is a PC (a catheter) that is a less favourable option, in my opinion (for me personally).  The catheter sticks out of the skin more so there is an increased chance of infection, which means riding is a less desirable option.  A fistula is inserted into the vein with a minor surgery and stays under the skin, so it is disgusting, but comes with a lower risk of infection.  One of the risks with the fistula is it does not last forever.  You eventually loose access of that vein and another one needs to be inserted, so when they are looking for an access point, they like to make sure you have a few good options.  I had two strong candidates, so they felt confident moving forward that a fistula would be an option for me *woohoo...I guess?!* 

Other than that I have spent the majority of my time trying to not get sick.  It's as glamourus as it sounds - lots of washing of the hands, lysol wipes, on guard diffusing, lots of zinc supplements, sleep and limiting contact with the outside world as much as possible.  KNOCKING ON WOOD - I seem to be holding on pretty well.  My clients have been super supportive and have been cancelling their sessions when they are unwell, which makes a huge difference and I have been listening to my body and taking breaks when I need it, sleeping whenever I am tired and trying to stay on top of things.  At this point any little bug that tests my system could really upset the whole balance thing I have going on and take a HUGE toll on my kidney, potentially fast tracking me to dialysis.  With that being said, I'm not living in a bubble.  I am a firm believer that I still need to LIVE, that's the point of all of this.  So I'm still going to the barn and running a few errands - I'm just cautious and wash my hands a LOT! 

Emotionally/mentally, I go through different stages.  I am loving the Christmas spirit and I am very much looking forward to having a week off (I'm TIIIIIRED).  It's still a little bittersweet every time something new and exciting happens.  I get to work with a new horse at the barn and I am so incredibly excited and proud to have the opportunity but at the same time I am SO frustrated that everything I have worked for, the horses, my business, even my body is all going to be taken away and I'm going to have to work my way back up again.  It sucks!  I know I can do it, because I've done it twice before.  I remember a few months after my second transplant being amazed at how amazing I felt.  There are days now where I think I feel pretty good, and in comparison to some really tired days, I do - but I forget what good actually feels like.  I am so used to being in a constant state of exhaustion, I have no idea what it feels like to do more than just get through the day.  So in comparison to some of the really horrible days I've had - I'm doing pretty good.  But I can't wait to actually feel good again.  

Harlow enjoying our extra naps.  

Friday, October 20, 2017

Chasing Sunsets

I've had a bit of an emotional week.  It was a fabulous week.  I had a full schedule of amazing clients, beautiful weather to walk Harlow in, stellar rides on my pony, great friends, and stunning sunsets.  Each time I experienced one of these moments that fuelled my soul, my heart broke a little with the reality that there will be a point where I don't get to do these things.  It won't be the same.  I hate that I have that thought sitting in the back of my head all the time.   Don't get me wrong, I am LOVING every moment and living my life much more in the present moment than I ever have.  I am taking it all in.  And it's showing.  Since changing my life drastically and moving my practice into my home, changing how I spend my energy and putting myself first, my numbers have improved.  I still need another transplant, and soon, but not today.

I had my client appointment almost a month ago and it went really well.  We have found a happy place with my meds and my blood pressure is manageable and my eating has been much better so those numbers have improved as well.  We made a date for me to go to the vein clinic to see if I have strong enough veins for a fistula.  To be honest, I'm doubtful, but trying to stay optimist.  I have really crappy veins - that's what you get for having transplant drugs pumped through your system for almost 10 years.  BUT, it is still the option that I think suits me best for dialysis.  Once it is inserted it's covered by skin so there is less of a risk for infection, meaning I could still ride and do pretty much everything else I would like to do.  The second option if the fistula doesn't work out is a PC catheter, it's a tube that is inserted just above my chest.  Because it isn't a closed object, the risk for infection is higher, and knowing my luck it would get infected.  So we will have to wait and see.  

Overall I really am feeling pretty good.  I have found a nice, sustainable schedule that allows me to cater to all of my clients as well as myself and I am doing my best to enjoy each moment as they come, making time for dance parties, ponies, friends, sunset hunting and obviously Lady H!