Saturday, January 9, 2016

14 months later...

Well to say that I have been remiss in my blogging would be a huge understatement. If  you are wondering where I have been??? well I have been busy living or should I say trying to live without concentrating on TM. When I last blogged I had just finished three marathons in 5 months,had a pending breast biopsy result and I felt a little fed up with the negativity that seems to be oh so prevalent in the TM community.

   So let me start by saying that my breast biopsy was negative for cancer...yay! That sure was a nice phone call to receive. I was clear to start training for the remaining two marathons for the last two provinces.

  In May, I ran the Sakatoon marathon. A small race with little fanfare but I was happy that my cousin Staci was at the finish line with her daughter Lauryn to see me cross it. I lost feeling due to Uhthoff's phenomenon so I need to get ice from the medical staff but all in all it was a good race.

   That left the final province....B.C. Jill had told me that Victoria was the race that I should run so that was my plan. October 11th I was at the starting line for a 8:00am start to finish this crazy goal of running a race in every province to raise awareness and monies for TM. The race was hillier than I had expected but I was running a PB until the Uhtoff's struck again and I lost power and sensation in my left leg at the 26km mark. It was sheer determination that got me to the finish line and the fact that I was going to complete this huge endeavor.I wanted it so badly and I had supporters waiting for me...there was no way that I was going to stop.
   I got to do so much in B.C. I also got to finally meet Jill, the person who I can talk about my TM with and who never judges and is not mad at me for my successes. I got to stop and hug her while running the final 300m to the finish was fantastique! to have her support.

   I read somewhere that only 31 people have run a marathon in every province, I am the 32nd and that is still a wow factor even without considering the fact that I have TM. I still find myself counting the provinces that I completed a marathon to make sure that I really did complete a race in all 10 is still unbelievable to me...its as though it sneaked up on me...or it that it seemed so impossible that I am in disbelief even if it was ME that ran those races.

   Has it changed my life???nope. I came home, hung up the medal and it was business as usual in my life. I am back to running the CTMA.

     I have worked so hard to help a community that seems to be a negative cesspool of depression, laziness and anger that is directed towards me because I refuse to go there. The CTMA has awareness events,campaigns and fundraisers and the funniest thing is that more people without TM participate than those that have it...its pretty sad that they cannot support their own association by participating.
I have struggled lately with what I should do about the association as there are not many bright lights in the community. I am holding out hope and I am still hoping that we can help some people deal with their diagnosis but I am sick of the negativity.

  It is really quite hilarious to me that running a marathon in all 10 provinces has worked out to be easier than running the CTMA and dealing with the TM community...its very sad...but its very true.

   If you have TM and are reading this and you are offended, I don't give a shit. Your diagnosis does not give you the right to be jealous,rude,insulting,negative,lazy and an all around asshole. So if you are displaying any of those behaviors....its time to start acting better and stop taking things out on others. Believe me when I say the rest of us think you are an asshole regardless of what your diagnosis is...stop being so egocentric,grow up and deal with it with some grace....GET SOME THERAPY if you cannot stop being a jerk but most of all spare the rest of us.


Friday, November 21, 2014

This is me

   It has been suggested to me that I post a recent picture of myself so people know whose ramblings they are reading.My response was that I have posted running pics but Ed was in town to accompany me to some doctors appointments and he wanted to try out his new camera.
  So here is what I look all cleaned up like in case you didn't have a clue before.

This is Mikey-he is the reason I rushed my mammogram as he kept kneading my left breast in a certain area that was very painful-it prompted me to get it checked.thank god

This is a picture from the wedding that restored my faith in love! Meena and David got married this pat May. I loved wearing a sari, it was fun.

This is me this past weekend at the Giants game in a VIP suite. It was my "make a wish" weekend to make up for my being sick. My friends went all out and spoiled me rotten!

Monday, November 3, 2014

And they said it couldn't be done....

   "It would be impossible".... "improbable"....."highly unlikely"....."it would be hard enough for a healthy person let alone someone with TM". These are just some comments that were thrown around in the weeks before the PEI marathon but then there were the messages from TMers. Messages from TMers that said "Run for us because we can't"..."You can do this"..."You've got this race". It was an incredible dichotomy to say the least and you would think the TMers would be more the naysayers given they know how tough it is to do anything with TM but they stood behind me as I attempted 2 marathons in 4 weeks.

  Going into the race weekend I was dealing with a lot to say the least. Despite all that was going on, I boarded a plane to PEI. I was really glad that I was going to be spending time with Tracey in PEI. She is like the sister I wish I had and everyone always ask if we are sisters (I love that). We had fun in the days leading up to the race and it was a nice distraction to hang out and catch up.

  I honestly didn't know if I could do 2 races in 4 weeks when the plane landed in PEI but I knew that I had to try. I also felt really healthy neurologically and physically in general so I was kinda confident that I might be able to pull it off. This was going to be province #8 and PEI only has one race a year so I had to go. So there I was, trying to defy the odds again and raise awareness for my little known orphan disease.

   So at 8:00am on Brackley Beach the gun went off and I set out on a beautiful 42km course with the initials JK on my arm and #8 on the other. For some reason the last two races I felt I had to run with my grandfather's initials(JK) on my arm and it may seem silly but I needed him out there with me in some way.I needed to feel I had the angels with me more than usual.The PEI course was much easier than Newfoundland to say the least but the last 2 miles had 3 nasty hills that I was more than well prepared given what I had run 4 weeks early.As I was running I kept thinking of how lucky I am to be running this race, that TMers that were counting on me to do this and this made me so much more determined to run a good race.

   I finished the race with a time of 3:58 and Tracey screaming "Go Kimbo Go!!" while I ran to the finish. It was an awesome moment.When I crossed the finish line I just bawled my eyes out...I sobbed so hard...harder than I ever have at any other race. It was the culmination of being overwhelmed with my own achievement and  finding myself swept up in how improbable this is all supposed to me for me to do....and yet I am dong it.

Nothing beats having one of your best friends at the finish line
to celebrate doing the impossible!

   I started this journey to raise awareness across Canada but it has turned out to mean a lot more to me than I ever imagined, it sucks to have to stop right now and take a break but it must be done due to circumstances that are out of my hands. I am also going to take a leave of absence from the CTMA to take care of things that I don't want to blog about right now.This will also be my last post for awhile as the time has come for me to concentrate on me right now in private.

Today's thought "People of mediocre ability sometimes achieve outstanding success because they don't know when to quit"-George Hebert Allen

Monday, October 6, 2014

The celebration is over

 I have been on a high since winning a gold medal at the Huffin Puffin marathon but as the expression goes...all good things must come to an end... an end? end.

   If you follow this blog you will remember than I have had to undergo quite a few breast ultrasounds since February due to some hyperechoic breast lesions my doctors were concerned about. Well I had another follow up ultrasound the day after coming home from the race and one of the lesions has "changed". The radiologist didn't like the look of it so I had to have a breast biopsy to confirm what exactly this change is.

  The biopsy itself is no big deal to go through especially given all the things I have had to face with TM but it did ruin the emotional peace I had since my last race. Again, I find myself thankful that I have my running to help deal with the stress of waiting for the biopsy results.

     But even more than my just running for something to do, I had decided to run the Charlottetown Marathon on October 19th. When I had decided to run it I was on the high from Newfoundland and the biopsy never existed. I have never run two races four weeks apart so the challenge is quite welcomed while waiting for the biopsy results.

    I really don't know if I can do two races so close together but I know that I am sure as hell going to try.I just recovered so well after the Huffin Puffin  marathon that while I am unsure, I am also confident that I can do it because I just feel fantastic physically and feel so strong.

   This will be Province #8 (PEI) and the last race for me in 2014 (unless some sexy half marathon appears in Vermont or NY to entice me) and some of my friends like to remind me that this will be 3 races in 5 months. I say "who cares..bring it on!".I need this challenge right now, it is something to look forward to and to be the smoke and mirrors that I need for the next couple of days while I wait to see what some pathologist writes in their report...while I wait to see if I have cancer.Yep...I said

    Now more than ever I want to finish this crazy journey as I am reminded once again that we have no guarantees and we should never stop pursuing our matter how impossible they may seem.

Today's thought: "Say no to your distraction so you can say yes to your destiny"

Tuesday, September 30, 2014

Sometimes all you need is a golden puffin

My gold medal
    If you have been following this blog you know that last Sunday I ran the Huffin Puffin Marathon in Newfoundland.If you recall I was also extremely nervous about this race and truth be told I was practically in tears the days leading up to the race. Jill's pep talked helped but I still found myself a bag of nerves on race weekend. I had just come off of two bad races due to TM and found myself calling on the angels just to get me to the start line in Mount Pearl.

    Running is my joy and all I ever wanted to do when I overcame the paralysis is get back to running marathons. Once I got back to marathon running it seems all I wanted to do was get back to being the runner I was and this year I let that go when realized that I am forever changed since my TM diagnosis. What I didn't anticipate is what this race would show me and just how I would be feeling when I left Newfoundland.

    Let me start by saying that we had the most miserable weather at the start line, rain and crazy winds had appeared because of some storm system in the Atlantic-there was even talk that ferries to Nova Scotia were cancelled due to the crazy probably you're thinking "You ran in that!?"...yes we did. Not only did we run in that, we also had ridiculous hills on the back 21 km...there were about 7 heartbreak hills on the back 21 km and only two water stations-it was so incredibly hard.The first 21 km seemed "medium" hard but when I got to the second half, I couldn't believe it. We had the wind,we had the crazy hard hills but we were also running on the extremely small shoulder of highway 3 with cars zooming close by with no spectators to root us on.

    I can honestly tell you that it was the loneliest race that I have ever run-lonely because there were not many other runners and there were no spectators. It was me and TM on an incredibly hard course and trust me, it was so very lonely on that open stretch of highway. All I kept telling myself is "you will not quit, you can do this, you didn't fight to get here just to quit" I didn't quit and as a matter of fact at the 35 km mark I started to turn it up and was beating out the relay runners (who only had to do 10 km!!).

    I reached the finish line with a time of 4:03:39 which isn't my best time but on any other course (including Boston) that would be a 3:45-3:50 finish because the course was so hard. I had some slight loss of sensation in my trunk area due to Uhthoff's but Fiona was great and found some ice to cool down my core.

  Fiona and I went to the post race BBQ and awards ceremony. I told Fiona that we could leave because I wasn't going to win anything but she had a feeling...and boy was  my Yoda ever dead on. I won the gold medal in my age category!! I had to hold back tears on my way up to get it. It means the world to me. Just getting back to running is awesome but the fact that I can actually be competitive even though I have TM means everything. Up until March I thought the runner I am was not enough, that I wanted to be the runner I was pre-TM....well as it turns out I am more than enough and I have a golden puffin to prove it.

Fiona and me at the finish line in Mount Pearl,NL
Fiona ran the half marathon

   In the week since I have come home, I  find that I have such a peace in my heart and my mind. I just feel so fulfilled and incredibly happy with what I was able to achieve. More importantly, I see myself in a very different way. Before this last race I saw myself as a gal with TM who ran but I came home a runner who just happens to have TM...the distinction may be very slight to those on the outside but if you are a runner or have TM (or both)-you know exactly how huge a turnaround this is mentally.

  I could not be in a better place heading into the next marathon.I want to thank the angels for getting me to the start(this was especially tough this time) and Fiona for getting me to the finish.7 provinces done and 3 more to go....I am actually starting to believe this crazy dream may be possible to achieve.

Today's thought "Miracles start to happen when you give as much energy to your dreams as you do to your fears"

My first ever addendum!!: I have to thank Jill for the pep talk the week leading up to the helped big time and she was very much in my head out there on the course. I ran it for both of us.

Thursday, August 28, 2014

This journey seems impossible at times

Last Sunday I completed a 23 mile training run in crazy humid,hot weather.If you have been following this blog regularly you will now know that this is when I usually get the confidence to officially announce publicly my next race.So without further ado.... ladies and gentleman on September 21st I will be at the starting line of the Huffin Puffin St John's Newfoundland Marathon!!!

  Its just crazy,really crazy to me what I am doing. The funny thing is that no one else thinks its crazy..just moi. You are probably wondering why I feel this way and I even wonder myself. I have come to the conclusion that it is the "supposed impossibility" of my completing a marathon in every province that has me unraveled at times lately. Sometimes I think I should have just counted my blessings with what I had done and not attempted this.

  The truth is, the closer I get, the more fear I have. Fear? you say...yes fear. It didn't seem scary when I had only done 4 or 5 provinces because if I stopped because my body couldn't handle it; I wasn't really close to completion and could have walked away easily (or so I tell myself). Now here I am with 6/10 of this journey completed...getting ready for number 7 and I am so scared at times that I am having a hard time keeping my focus on just one race at a time.I would go back and see my athletic therapist if I didn't dislike her so much- maybe its time for a new sports therapist.

   I am not sure a sports therapist is what I need seeing as I know this is a "fear of failure" issue.It is a repeated theme that keeps arising after TM sauntered in to my life. Its funny because I know no one will care if I don't finish this journey but what I didn't count on is how much it would mean to me to do this because of how impossible it really is given a TM diagnosis.As usual I am too busy looking at what I haven't done to see what I have...I promised myself not to do that anymore but living with TM is tricky and life itself is tricky at the best of times.

  The pressure comes from the fact that I know every race in theory should have been "an impossibility" and here I am doing it over and over again...and in the back of my mind I wonder when will my luck run out.Those are my demons and luckily I have angels who hear my calls and they get me to the starting lines. Believe it or not, the starting lines are tougher to reach than the finish lines as it takes way more courage to get to the start. To me the starting line is the loneliest place on the planet...the rest is easy....its just running and dealing with the physical.

  I knew that this journey would be tough..10 provinces,10 marathons with a body that shouldn't be able to do 1. That's just the physical side of it, I had no idea how tough it would be mentally or how many times I would have to reset myself to just think about the next race and not how many are left or how impossible this is supposed to be,

  I am glad that St John's is my next race because Fiona(my Yoda) will be at the starting line with me as she is doing the half and days leading up to the race will distracted by us having crazy fun.I have decided that over the next 4 weeks I am going to try to enjoy the anticipation of the next race and push out the fear. I am already super excited at the thought of seeing Puffins...I love Puffins.

Today's thought "Don't let the fear of failure triumph of the joy of participating"-Unknown

Wednesday, June 18, 2014

If you can't stand the heat....should you get out of the race?

Okay I know this blog entry is a long time coming. I have been told by a few that they have been waiting for a blog post on the Fredericton Marathon and well it is!

It hasn't been easy for me to write this post and I guess I have been putting off sitting down to write it because there are some emotions to deal with in regards to what happened in Fredericton on race day

I would love to tell you it was uneventful and I ran with swagger and killed the field but I didn't. As a matter of fact it was my worst marathon time ever and I was lucky just to finish.

So by now I am sure you are asking yourself  "what the hell happened?" so I will stop delaying the inevitable and write about Fredericton....who knows it may even be cathartic.

I want to start by saying I had an amazing first half of a marathon, I completed the 21 km with a time of 1:45 and was on pace to my usual 3:45-3:50 range. I was feeling pretty confident despite all the rain that had arrived the day before because the skies cleared and the sun had started to come out...but as it turns out that wasn't such a good thing.

By the time I had reached the 25 km mark we were running in full sun and really hot temperatures had hit but I was managing my fluid intake well by grabbing two glasses of Gatorade at every station so I thought nothing of it-after all I did run under caution conditions in Miami with no problems (even with a broken toe).As per usual, I lost about 70% of the power in my left leg at the 30 km mark but again, I am used to that so I didn't panic and felt confident that I was still on pace and everything looked good to finish.

What started to happen at the 34 km mark has never happened in all my 8+ years of racing with TM. I started to lose complete feeling in my body from the waist down and it continued to move down to my thighs as I continued racing. Honestly, I was starting to get worried by the 39 km mark because the course did not have many race marshals, spectators or anyone for that matter and I thought I was in the middle of a 2nd TM attack because I felt like I did on March 14th 2006 when TM first hit me. I thought to myself  "oh my god, I am going to get hit with paralysis again and they won't be able to find me in the ditch" I kept running to get to the finish line as fast as possible in case the paralysis came or if the legs stopped working altogether. I have never been so worried during a race and I manage to make  it to the finish line...running not quite as fast as I normally do but I made it. Province #6 done!

After making it to the finish line I slowly walked around trying to assess what was going on when I decided to get the hell out of Fredericton as soon as possible and get as close to the Montreal Neurological Institute in the shortest amount of time.I went back to my room and grabbed a shower and noticed that things were not getting better but they weren't getting worse either. While moving really slowly, I packed up the car and started heading home right after my shower even though I had planned to stay until the next day. I knew that there is a good neurology department at Hotel Dieu Hospital in Quebec City if I had to stop on the way home but I felt I had to get out of Fredericton ASAP.

Luckily by the time I hit Riviere de Loup, I started to feel pain in my hamstring and buttocks..YAY!!! It was the post-race muscle pain and it meant that my sensory system was coming back!! What a relief.Whatever happened during the race was reversing itself. Lucky for me Fiona and I talked on the phone the whole time as I made my way home from Riviere de Loup. Talking to her distracted me and really helped calm my emotions for 5 hours. I wasn't ready to deal with it until I got home.

I was able to get an appointment with my neurologist four days after the race to discuss what had happened. As I waited outside his office I prepared myself for the "you have to stop racing" conversation and I thought okay I am ready to hear it after what happened four days prior. I thought I would go home, have a good cry and deal with retiring from racing in the months that followed.I even made a list of other things I would take up to replace it...SAILING being #1!

To my surprise Dr. Durcan told me that I don't have to stop racing and that what happened to me on race day is what is know as Uhthoff's phenomenom. In a nutshell, my core body temperature got very hot due to the temperature in Fredericton and this coupled with running 42 km caused my neurological symptoms due to TM to worsen. Dr. Durcan said that I need to consider racing in cooler temperatures, look into purchasing a cooling vest and find ways to keep my core cool during a race. We did discuss my retiring from racing but Dr. Durcan feels that the benefits far out way the risks in my case because racing is such a huge part of who I am and my life.

The next two races that I have planned are not only in cooler times of the year but also in cooler places. I have moved forward with training for the next race in what will be province #7 and I am in week 5 of  my 18 week run schedule.
Emotionally it has been tough dealing with the fact that no matter how hard I training or work, the deck is slightly stacked against me and there is nothing that I can do about it. So I will use cooling strategies when training on hot days and do the best that I can to make sure what happened doesn't happen again.I wish I had know about Uhthoff's long ago as it now explains all those valleys that I experience every summer in Montreal when it gets ridiculously hot and humid.It would have made things a lot easier in terms of prevention.I am actually kind of upset that none of the many neurologists that I saw ever mentioned heat intolerance with a neurological disease such as TM but they tell MS patients...sigh.That is a subject for an entirely different post.

I feel really lucky to have managed to do the 12 marathons I have with TM because at any one time during those races it could have gone horribly wrong. The last 8+ years I have called on my angels for help during training and definitely during every marathon-I cannot help but feel sometimes that they have heard and have answered my calls....that they have spared me from the worst that TM has to offer.As always, I feel tremendously blessed.

Today's thought: Believers, look up - take courage. The angels are nearer than you think."-B. Graham