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

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

Fisssstulaaaa

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!

Friday, August 25, 2017

Coffee Dates


I have been thinking a lot about dialysis (mainly because I was exhausted this week and my blood pressure is up).  I spent the morning in IV therapy getting my iron infusion.  I go every couple of months.  I have my routine: I get my tea, I bring some work and a good book; I pack my warm, cozy socks, the nurses are amazing and I do my thing.  It sucks that I am going to need dialysis, and the whole fistula thing still enrages me in a super gross way but I've decided to make the best of it.  I like routine.  I can make it work.  My new plan is to make the best of it.  I plan to find my routine - I will pack my warm socks, my books, and movies, and make it my social hour, making all of my friends/ family hang out with me.

I've had an amazing summer.  I am so, so grateful.  BUT, it's been 6 months since I was told that I would have 24 months before needing a transplant (or dialysis) in order to live.  My blood pressure is much higher than it has been, and my numbers are slowly and steadily rising.  I still feel pretty good. I have my schedule down to a science so I am able to get through everything that I would like to do.  The only time it becomes a problem is when there is something "extra" to do.  Last weekend I drove to Toronto for a fitness conference and it took me until my day off on Tuesday to recover from it.  I am slowly learning to say no to more things and put my health first.

We still don't have any leads for matches, and we won't likely find one in the area.  I will be relying on the databases they have created in order to find a match.  As always, in the meantime, I will just keep doing what I'm doing and modifying when need be.    

Tuesday, August 8, 2017

Loving Life


I know I have been a little MIA for the last few months, it was not unintentional.  I made the decision in June to simply enjoy my summer, a season that I practically live for.  Sure, I enjoy spring & fall (we aren't even going to mention winter...) but in the summer my numbers actually improve, I am scientifically proven to be happier and healthier in the summer.  If the States wasn't a political nightmare I would seriously consider moving to California.

Even though I made the decision to put the reality of needing another transplant on the back-burner for a few months, I have done a lot of reflecting and planning for the future.  I have made some big life changes in order to set myself up for the next 2+ years of my life.  I have faced the inevitable that I am probably going to end up on dialysis at some point before this transplant.  The odds of finding a match and not impossible, but they are tricky.  I have made the decision that when the time comes I will do hemodialysis where I go into the clinic to have it done a few times a week, rather than trying to do it at home.  I like the idea of knowing that on those days that's just what I'm doing - I go in, do my thing and then leave.  I don't want to turn my home into a place where I have to go back to do dialysis.  I have also made the decision to do a fistula (which gives me the fucking heebie-jeebies, but the alternative tubing comes with the risk of infection and limits my activity options more.  A fistula is the lesser of two extremely shitty options).  So, like I said, I have done a lot of reflecting.  It doesn't make it any easier, but once I get my head around something, I can get through the physical act of doing it.

I do not have any new leads on finding a match.  I have had so many amazing individuals come forward and start the testing process, but as previously mentioned, there are 2% of the antibodies that I won't reject - finding the right match is going to take awhile.  So, if you have been considering donating, please contact the team at LHSC - who knows, you might be my 2%!    

Thursday, June 1, 2017

What I Need


After getting some bloodwork done on Monday, I had my clinic appointment with my nephrologist yesterday to go over my numbers and check in.  Overall, everything looks relatively good considering I have a failing kidney.  In three months nothing has taken a major hit, and we have found a happy spot with my meds to control my blood pressure (the fact that it's warm out and I have modified my work schedule also helps with that).  The three main take-aways from the appointment were:

1) I need to get my shit together with my nutrition.  While I think it was fine (maybe even healthy...) to take a three month self-pity hiatus and live off of pizza and caffeine, I'm not doing my body any favours.  It will be a challenge, as I still don't really have an appetite, but I'm going to start to make the shift from pizza to homemade muffins and boxed Mac and cheese to some quinoa (or even soba noodles).  So food prep is on the list of things to do this weekend.

2) There is no financial support programs out there for self-employed individuals needing recovery time.  There are a few long term disability programs available, but I don't financially, or medially qualify for those, or there is Ontario works, but again, at the moment I do not financially qualify for that, nor does it cover health issues for a short term case.  So that was a bit of a bummer to find out.  I love the fact that I can play around with my schedule and have control over my hours, but it's tough when I don't work - I don't get paid.  At some point, the plan is to have some sort of fundraising party before the transplant - stay tuned for details :)

3) The last big thing we went over isn't really news to me, but we talked about how it is going to be quite challenging to find someone who is a match for me.  I have developed antibodies against almost 100% of all antibodies.  So, somewhere out there someone is made up of the 2% of antibodies my body won't reject.  There are a few options - living donors are still an option, we are still encouraging people who are O+ and wanting to get tested to see if you are a match to call and start the process.  But having people who are similar to me decreases the likelihood of them being a good match for me; I need someone who is different from me (different background, with antibodies I haven't been exposed to).  Once I complete my TB test next week, I will have completed everything I need to do to be entered into the database.  This will open up several more options, as they can look at the Kidney Pair Donation (the fancy trade I talked about previously), or have access to other donors across Canada who may have the magical 2% makeup that I need (they may be living, or deceased - living is preferred, but I am slowly getting to the point of having to take what I get).  

What I Need

It has been so amazing receiving everyone's messages and offers to help.  Honestly, at the moment, all I need is a kidney.  I'm not at the "hand out donor cards", "put up a Facebook ad" need-a-kidney spot yet, but if you are O+, within the age range of 18-40, in overall good health and feel like sharing your spare kidney, please call 519-663-3552 to start getting tested.  Other than that, I have a pretty good support system around me that I am leaning on.  If I need any further help, I will post a list on here and you can contact me if you would like to take on a job!  I appreciate all of the offers, and at some point I will need all of the help I can get - right now I'm managing!  As we get closer to the surgery and even during transplant time, gift certificates may seem impersonal, but they are one of the best ways to help.  Places like Remark, Tim Hortons, Companions Pet Resort (Harlow's daycare), Chapters, Be Over Clean (the cleaning service I use), etc. will all be very helpful.  Thank you for your generosity and continued support xo    

Wednesday, May 17, 2017

Coffee & Carbohydrates


Food has never really been my thing.  I'm not a foodie, I don't really enjoy food, I just eat because you kind of have to.  On top of that, you add in the unhealthy relationship with food I had in high school with my eating disorder and you can understand why food isn't exactly my thing.  I have learned to control my eating disorder instead of having it control me, but it is something I continue to work through each day, especially when there is so much in my life that I do not have control over currently.  Lack of control is the main contributing factor to the origins of my eating disorder.  Kidney failure at a young age, constant reliance on medication to keep me alive, back surgery (right, have I forgotten to mention that one?! FYI, I have rods in my spine as well)...there is a lot in my life that I have very little control over.  What I ate (or didn't eat) was something I could control.  I have now learned to focus on other things that I can control. Overall, I still don't "live for food", but I try to  focus on the fact that it is fuel to help my body.  I learned to shift my thought from needing to control my life through food, to wanting to be healthy and strong.  I put all of my control issues, self doubt and distorted views of my body into working out and feeding my body appropriately to build muscle.  It worked beautifully.

The problem with that is, I don't currently have an appetite; and I'm tired.  I have had to cut back my workouts from going hard five-six days a week in the gym to one modified weight workout, yoga, some Pilates, walking the dog, and riding.  Don't get me wrong, I am still very active, but I'm not able to channel all of problems and dish them out in a workout.  When it comes to food, I've had to ditch the idea of fuelling my body the best that I can, to simply eating whatever looks appealing because you really do need food to live (so I'm pretty much living off of caffeine and pizza).  To be honest, I am handling it better than I was expecting to.  I was ready to talk myself off some ledges, but I think I am in a good enough place, with a lot of support that my main focus is simply getting through this rather than "looking good" and getting through this.  It would be nice to be eating a bit better, simply because it's better for my body to function the best that it can.  I've even taken the time to prepare healthy meals, but when it comes down to actually sitting down to eat them, the appetite isn't there and I have ended up just wasting a lot of healthy (expensive) food.  So, I've let that go.  I've let food prep go and I am taking it day by day, doing multiple trips to the grocery store and picking up whatever looks appealing that day.  It's been a very interesting experience, this whole learning to forgive myself - it's hard work, but I highly recommend it!        

Sunday, May 14, 2017

Once Upon a Time...


Over the years I have grown tired of retelling my story.  Every time a new resident comes in, I see a new specialist, ANYTHING new, I always get asked the same question - what happened to your native kidneys?  When it comes to medical personal, I don't usually have the patience to go over the past 18 years of my life when they can read it from my chart, but for those of you who don't know the story I will share it here and may even use this to fill in any new residents that come my way.

When I was seven, my parents noticed that something wasn't right.  I was tired, moody, struggling in school and eventually had blood in my stool.  I was taken to my family doctor first who then referred me to a specialist.  The rest happened very quickly.  I was diagnosed with kidney failure with an estimated 11% kidney function.  To this day they still don't exactly know what happened, but they put down reflux (when urine travels back through the urethra before passing through the bladder).  We started looking for kidney donors.  It came down to three individuals: my dad, my nana and my Great Aunt, Betty.  My nana was not in the ideal age bracket, my dad had three urethras (you are only supposed to have two, it was too much of a health risk for him to donate), but my Aunt Betty was a perfect match.  Unfortunately, we weren't able to move fast enough, and I needed dialysis for a short time before I got the actual transplant.  It was hell.  Not a whole lot went right.  There were machine issues, hernia issues, twin bag issues, missing school issues...it was so bad that the actual transplant itself was a relief.  I had my first transplant February 29th, 2000.  I called it magic day before it was leap year of the new millennium.  It was a success and I got 11 great years with it.

Transplanted kidneys, on average last about 10 years.  They can absolutely last longer, but that is just the average.  I received my second transplant on March 9th, 2011.  I was in university.  The second time around it was my numbers and how I was feeling that indicated it was time for another transplant.  Again, I was tired, moody, had concentration issues, and experienced high blood pressure, low hemoglobin, and a rising creatinine.  Luckily, we were able to get ahead of the game this time and avoid dialysis.  I received my second transplant from my mom's cousin's wife, Jen.  It was a good match.  The first year after transplant is the most vulnerable.  That's when there is the highest risk for rejection, infection, etc.  The year after my second transplant I experienced EBV, Meningitis, little bouts of rejection, low white blood cells, etc.  It was rough and caused scaring on my new kidney.  Things started to look up from there, and I was able to get a few really great years.  I put a lot of stress on my body, running a studio and working long hours.  Between additional stress, scaring already on my kidney and plain bad luck my body started to reject my new kidney.  

That brings us more or less to present day, minus a few details (hey, you got more than most residents do...).    

Thursday, May 11, 2017

Calling All O+


Well friends, we got the call yesterday with the results from our crossmatch and unfortunately, Haily & I were not a great match.  Our antibodies were too similar, meaning I would reject her kidney quickly.  So, in a way I am back to the drawing board.  We do have the option that if someone else is a match for me, and Haily is match for them we can do little switch.  That being said, we are also able  move on to the next potential donor and start working up another person.

In the meantime, I will just keep doing what I am doing and put a shout out to anyone who feels like giving up a kidney :)