Coffee & Karma

My body tells me one thing, I tell it to GTH . . .

2011-01-26T12:53:00.002-05:00

I'm feeling tired. I'm feeling run down. Too bad.

To hell with that, I remain very optimistic.

I'm on the treadmill almost everyday and jogging up and down the hydroline trail on the way to and from work. It makes me feel great, but afterwards I feel a dull ache in my chest and am tired afterwards. Once this tumor/abscess is gone, I'm going to feel like supergirl.

I haven't got anything planned for this spring running-wise. I am registered for Ottawa Race Weekend half-marathon, but timing might not be possible, depending on when surgery is (I've been assured it's 'any day now.'

I really like that I'm still very upbeat and optimistic at my recovery. The surgeon said that the tumor/abscess is well-contained and not seeded on the chest wall, which makes the chance of spreading anywhere very remote. The cells are not malignant but the infection is the same bug as last year.

I would like to run a couple of trail races this year, but I will have to see how I recover after surgery. I'm not going to push it. It's more important to recover first.

How to survive disaster in some not so easy steps . . .

2011-01-14T21:46:00.002-05:00

I haven't posted in awhile. I know that. Sometimes I don't feel the need to post when things are content and swimming along great.

Then karma kicks me in the arse.

If you scroll down to October/November/December 2009, you will see what I went through and survived. Then I forgot and happily skipped down the trail.

Then a lump started growing on my chest wall where the surgery took place. I finally started barfing and getting really uncomfortable pain. My energy was draining and it was taking a lot out of me. I finally got it looked at.

The initial thought was that it was an abscess forming around the end of the wire that could not come out. The wire needed to come out, the surgery I was dreading, since the wire runs up from my chest, up high into my neck. There is a possibility I will lose my voice. Sounds horrible, right? Well, something inside me told me that this wasn't the worse thing that could happen. Something worse was happening.

I went into ultrasound. The goal was to drain the abscess and test the fluid. Start me on the appropriate antibiotics to fight the infection before surgery.

They could not drain the 'abscess' because it wasn't an abscess.

It was a tumor. A large one.

Six passes of a large bore needle deep into my chest later, they took all the samples they could that day.

I saw the enemy on that ultrasound and I knew the worse was happening. There was nothing I could do.

I live the best that I am able. Why weren't having seizures enough? What the hell kind of karma am I carrying around? It is barely enough to handle for one person, so I really try to carry on.

I try my best to carry on, but I have no idea what kind of future I have anymore. I have no help but me. I cannot let myself down.

I am angry. I am sad. I am frustrated. I am confused. I am lost. I am sore. I am sick. I am tired. I am scared. I am worried.

But . . .

I feel the wind. I see the sun. I love the stars. I love the moon. I have spirit. I am strength.

I understand. I love. I smile. I laugh. I taste. I feel. I have faith.

I don't know what the future brings me, but I must continue to be true to myself. Just continue as long as I can. Being me.

New strength training . . .

2010-06-06T09:31:00.002-04:00

You know your new strength programme is working when you wake up paralyzed in your arms and your core. Holy hell, I'm sore today!

What doesn't kill me only makes me stronger, what doesn't kill me only makes me stronger, what doesn't kill me only makes me stronger . . . .

Right now, it consists of:
1) bench press with 10lb dumbells
2) situps
3) lateral raises with 10lb dumbells
4) leg extensions with 8lb weights
5) standing leg curls with 8lb weights
6) 10lb dumbell raise (behind head)
7) tricep pull down with R-band
8) shoulder shrugs with R-band
9) dumbell curls with 10lb weights
10) 10lb dumbell presses
11) lateral pull outs with R-band
12) push ups off of step
13) leg raises from kneeling position with 8lb weight
14) lateral leg raises (standing) with 8lb weight
15) burpees
16) lunges
17) plank
18) side plank
19) superman
20) one leg balance on bosu ball
21) lateral pulls with R-band
22) back leg raises with 8lb weights

Horrible. The horror. This should work. Scheduled once a week right now.

Revival!

2010-06-04T17:16:00.002-04:00

We were all discussing our blogs on RM (www.runningmania.com) and I realized I've been blog-neglectful lately. So, maybe with the new goals I've set for myself, I should dust off the blog and journal my journey again.

The health disaster that was this past winter is past and the only thing that remains are the well-healed scars on my chest and the small scar where the PICC line was. It actually made me shudder to see the posts previous with the pictures of the open wounds I had. But that is past and I've moved on.

I've had a great spring and just completed my second and most fun half marathon. I thoroughly enjoyed myself. It's nice to be able just to enjoy the experience rather than worry and fret over things that you can't control. That's not me.

My new goal is a 50K trail run at Haliburton Forest in September. It's very ambitious for someone like me, but I think with all the crap I can get through with a smile on my face, it is a possible goal. I already have the mental part down, just need to get the body up to speed (distance).

This is my first week of my training programme. It is mostly a recovery/cutback week, then I'm starting into it. I was at my RMT's office today and it seems like I've come through this pretty well. I also had a great 10+K run today along the river. It was very enjoyable and I stopped to look at baby ducks, take pictures and take in the beautiful day. I also had a though that maybe I should just stick to distances and not worry so much about the time. I dunno. I'll think about this more.

Welcome if you are new to this blog! Welcome back if you notice I've started posting again!

I'm not the only slacker . . .

2010-02-11T14:06:00.003-05:00

It seems I'm not the only one slacking off of blogging as of late. Some of my favourite and fellow bloggers have been posting about their lack of posting lately. I am guilty too. It might be the effects of SAD (seasonal affective disorder) that have giving me the blahs. I'm currently sick of cold and have swallowed my pride and gotten a gym membership to keep up my running which is the only thing keeping me from hanging myself (figuritively). I keep getting colds (this is my second in a month for a girl who rarely gets colds). I had another bad reaction to the last antibiotic that I'm supposed to be on long term. Being so itchy is torturous and I'm really done being a little guinea pig.

In other news, Stella decided to snack on a Blackberry. Not the delicious, tart fruit available from California growers, but the lovely little Blackberries that I rely upon for daily life supplied by RIM.

Obviously this is damage NOT covered by warranty. This was a major $$$$ ouch to replace. Nothing new perhaps with Stella. She likes to cost me $$$$. Oh well, she is damn cute and provides hours of entertainment and love.

No updates . . .

2010-01-15T15:55:00.003-05:00

I haven't been doing much. I'm slowly trying to rebuild my base, running or snowshoeing everyday so far this year. It's been successful up to this point.

Stella turns 2 years old today. She is no longer a puppy. Don't tell her that though. She's still acting very puppyish.

On the eve of 2010 . . .

2009-12-31T20:30:00.002-05:00

What a year and what a decade! I have to admit, despite all the hardships, I've had an amazing life - especially in the past year.

I am thankful of 3 fantastic furry daughters (one of whom is farting away right now and doesn't smell so fantastic), healthy parents, great friends, I'm running, I'm alive, I have a job and a good life right now.

I hope everyone has a great 2010 and it finds everyone healthy, wealthy (or wealthier) and wise!

Live long and prosper.

Happy X-Mas!

2009-12-24T18:47:00.001-05:00

Peanut, Latte, Stella and myself wish all the readers a fantastic holiday. May all your dreams come true and I hope you have an even better 2010!

Comeback . . .

2009-12-19T16:31:00.002-05:00

I am sloooooowly returning to pre-surgery status. Last week I ran/walked 14K. This week I ran 24K. I feel strong though and feel I could be running more, but I want to take it slow, since this would be the time I could hurt myself. Next week, the plan is in the 30K range. Also, all runs are easy for now, to get back into the swing of things.

I'm allergic to the new antibiotics, Septra, so I have to go back and might get the PICC line back in. Boo hoo. Not happy. Oh well, the sutures are out. The skin coming off the hands is gross, but what is really gross is the skin coming off the bottoms of the feet in large and thick sheets. Uggh. Think worse blisters ever. I just coat the feet in Penaten (sp?) zinc cream, wear two pairs of socks and get out there and ignore it.

Happy, happy, happy . . .

2009-12-12T16:41:00.002-05:00

I ran today. I ran happy. I ran until I cried happy tears. People must have thought I was crazy. I am sooooo happy to be running again. Comeback, here I come.

Surgery story . . .

2009-12-10T10:48:00.002-05:00

Surgery was December 1st. I woke up too weak to stand up for longer than 5 minutes at a time. That would make getting to the hospital very, very difficult. I had had a bad reaction to one of the antibiotics I was on the day before and I had personally stopped everything going into the PICC line. My skin was inflamed everywhere and I was a bright red and intensely itchy. I was swollen. I lay in bed that morning and put an SOS out on Facebook. Luckily, I got an answer right away from a co-worker, J that he had no problem picking me up and driving me to the hospital. Thank you J.

I get there and make it to the pre-surg clinic with a little help from some volunteers inside the hospital. I was taken into the back right away (so lucky, since I didn't have the strength to sit in a chair.) I lay in a stretcher while nurses and doctors came to look at me with pity for what was hours, but for me, was a well-earned rest. I slept a lot of the wait.

I was brought into the hall outside the OR room and met with the surgeon and his residents. They used me as a teaching example of a bad drug reaction. The anesthesia person and her medical student felt sorry for me and gave me IV Benadryl. I could not stop scratching the inflamed skin. I would have scratched more, except I would have frequent waves of weakness. Finally I was brought into the room. I could not wait to be 'put under' if only to be taken away from the torture of itching and pain for a brief time.

I woke up in the recovery room in an instant. That is what it always feels like, that you close your eyes in one second and wake up in the OR in another. The time on the clock looked like 5 hours had passed. I was spending the night in the recovery room, but I was rolled to the other side of the recovery room. I had an IV going, pumping fluid into me. I had counted 3.5L of fluid going into me during the night, but I didn't pee hardly at all. I slept rarely, and when I did, it was only for a half hour at a time. I got pain meds and benadryl every 4 hours. I texted K and she would pick me up in the morning to bring me home.

I looked horrible over the next couple of days. The drug reaction continued. My skin swollen, then shrunk as I started peeing again. Some of the rash looked permanently tattooed to my body and is still there to this day 10 days later. The top layers of skin all started falling off. I gradually started seeing my eyes again, everyday the swelling started going down and down. The weakness continued for days and just these past few days that I have started walking in the neighbourhood, 3K, 5K, etc. Hopefully, my strength comes back and I can start running again. The IV PICC line is still in my arm, but they have started me very slowly on another antibiotic and I am just nervous that I start having another reaction, or the infection comes back with a vengence.

Day by day.

Light at the end of the tunnel . . .

2009-11-25T21:03:00.002-05:00

Surgery is now on Monday. The wires and the unit are coming out. I am so done fighting this infection. It has taken so much out of me in such a short time. I mentioned that a month ago, I had ran to and from that appointment for about 11-12K at one of my fastest paces. Today, I could hardly make it to the office from the parking lot.

I don't know how much longer I could have waited. I probably would be dead.

911 call . . .

2009-11-23T11:18:00.002-05:00

So here's the backstory in case anyone wants to know.

I've been having fevers and feeling weaker steadily since Thursday. Saturday night, everything went to hell. I started in full rigors, shaking, clenching teeth, the whole thing. I started taking acetaminophen to try and break the fever all night and started burning up in fever. I almost considered calling 911 during the night, but I figured that if I got some tylenol in me, I could get a handle on this.

By the morning, the fever was broken and I was drenched in sweat, but got up and let the dogs up when I passed out in the kitchen. Oops! The room was still spinning when I let the dogs in and fed them from the sitting position on the floor. I got up to find the phone just in case and fell again. Oops! This time, I knew the infection was probably in my blood. I wasn't sure how much time I had to be conscious, especially if this was sepsis so I had to make a decision. Time to call in the professionals. I unlocked the front door, put the dogs in the spare bedroom, went to go lay down and called 911. They were there within the minute from what it seemed to me. I had 4 fairly good looking guys all in my bedroom staring down on me. Of course, when something like this happens, your house is a mess (more messy than usual). I was just soaked in sweat. I looked sooo sick. They took me to the hospital right away. I was in an ER bed being treated within 30 minutes of calling 911.

Tons of blood tests, wound swabs, IV antibiotic and fluids, CT and chest x-ray later, the infection has finally spread to the lymph/blood. It took awhile! Just shows how stubborn I am. I kept an infection at bay (with IV antibiotic help) for two weeks. The infection still hasn't spread to my brain or my lungs yet and they wanted to admit me for more IV antibiotics (there are no beds in the hospital so I would have spend a couple of days in the ER), but I can do this at home (hell, I do it for a living). So now, I'm giving myself the IV Vanco and the IV meropenum. Home care and the pharmacy were a little upset I was being discharged, but everything is going well so far this morning and I feel weak, but no fever. The pain is worse around the wound and the lymph nodes around it are particularly sensitive, but the T#3s are okay for now. The great thing is my surgery will be moved up and I expect a call soon.

I have a whole team of unofficial home care nurses that are hard asses on me and a few official ones. Right now, I'm just laying low and waiting. Thanks for everyone's support. I'm just planning my next training programme and readjusting my goals. I'm planning on restarting this 100 runs in 100 days starting January 1st!

I will not let this get me down!

A little downturn . . .

2009-11-18T11:11:00.003-05:00

I was half awake with a lot of wound pain and a fever all night. I might be pushing myself a little too much. I just finished working two shifts in a row, and maybe that is not such a great idea, but it really helps my psyche with this crap. I like putting my problems on the backburner and showing myself and my co-workers that this is nothing, that I can easily deal with this with humour and ease. But today is not such a good day. I feel really, really weak and shaky after last night. I took a T#3 for the pain this morning and am hoping it is helping with the feverish feeling. I have to walk to the nursing clinic and I am hoping I can do that with stubborn pride for myself at least. I thought Vanco and doxy could kill everything driving me down right now, but I guess this infection is going to take a lot out of me. I just wish this shit wouldn't just keep happening to me. I can only take so much before I break.

I have absolutely no appetite today except for coffee.

Trying to help out Lorne & Mich!

2009-11-13T10:20:00.003-05:00

This is for Lorne & Mich, to try and get the web bots to find their site. They raise and sell beautiful birds.

http://www.mlaviaries.com/

Check them out so the web bots will find them! Their new site isn't being picked up by search engines yet.

This just hasn't all sunk in yet . . .

2009-11-12T09:38:00.004-05:00

I really don't think my situation has sunk in yet. I think it sneaks in every once in awhile. I tear up every once awhile when I think about it, then I pocket it away when I realize what is going on. I try and find a way to make this all the "new normal" and take pride in making all of this just part of my everyday life. But how can you?

A picture of my new PICC line in my upper right arm.

I got a PICC line put in on Monday. Everything went fine, but I was nervous leading up to it. I had to spend most of the day at the hospital for the PICC line insertion, then going to the ID clinic for my first dose of IV Vanco and doxycycline. The IV Vanco took 90 minutes! I wish I had brought a book or something though, because the time went by soooo slowly. I have not felt like reading lately, but maybe I should start ordering some books and start on them. Home Care came and saw me and said that all my equipment would be coming to the house. It arrived shortly after I got home. Medical supplies have taken over my house. Boxes and boxes. The bags of IV Vanco have taken over the fridge. I have an annoying little CADD IV pump that is easy to use (I've already found out the code and adjusted the times), but is really a pain to lug around.

The home care nurses are supposed to come and attach the IV CADD pump, change the dressings and the idea is to leave the IV attached to the PICC line for 24 hours and it is supposed to give me my two 12 hour doses, plus a TKVO dose during the day, but I can't handle having the little blood pusher attached to me all day, so I disconnect it and flush my own PICC line so I can try and live as normal as possible. I don't think the home care nurses have a problem with this (that I have encountered so far), since they know what I do for a living and they are too busy as it is, but I am trying to work as close to the surgery date as possible (a date I have not gotten yet).

I worked one shift with the PICC line in and I gave myself the Vanco during evening shift. An arm warmer helped hide the existence of the PICC line very sufficiently. My great co-workers changed my PICC line dressing for me also.

I am really, really sad and frustrated at the fact that I had to stop running Sunday. The pain is too great and you can feel the ripping through the skin of the chest, no matter what I wear on top of it. I am replacing that with speedwalking, but it just not seem to be the same. I just hope I can start running as quickly as possible after all of this is done. I am trying to keep up my milage just the same, but of course it's going to drop from the last month (my highest month and weeks ever were just previous). I would like to keep myself above 30K no matter what.

This is how far the stimulator has come out since my last dressing change.

PS: I woke up with absolutely no pain this morning! *cross fingers, cross fingers* I can hardly believe it. It's such a beautiful day outside too. I am sooooo very tempted to disconnect myself from the IV and go for a run. Really. Later on this afternoon though, when the IV is done and my next dressing change is done, I might just get into my running clothes and do another speedwalk around the neighbourhood and see how it goes and maybe do a light jog if things remain the way they are. I am just feeling so wound up I could really use a run for sanity.

Fantastic weather . . .

2009-11-07T17:43:00.002-05:00

It got up to 9 deg Celsius today so I had a great 9+K trail run. I wish I wasn't in so much pain though, I might have enjoyed it more. I'm going to have to take a hit and stop running trails and keep all the runs short and easy now because the pain is just too much right now.

Updated picture below. You can see the stimulator quite clearly now through my chest.

Where the runnin's at . . . .

2009-11-06T22:43:00.003-05:00

Well, here in the middle of the sick cesspool, I tread water. I am determined to keep up the 100 day challenge (100 runs in 100 days) even through this health crisis mess that I find myself imbroiled in now. It's funny, how I look to the beginning of this blog, that my running started as a result of my last health emergency and it got me through that and made me a better person for it, and now I find running as a soliste to get through this one.

Today though, I pulled off 7+Km but I don't know how. The pain over the stimulator is insane right now. The small hole that all the drainage was coming out of has gotten bigger and you can actually see the stimulator through the hole in my chest pretty clearly. I don't know if the pain if from the drainage or the hole actually ripping, but it pretty much stops you in your tracks when you are running. Everything is pretty much bundled up pretty tight on my chest so there is no "bouncing" to aggravate the stimulator area, but I think the stimulator is doing its own bouncing in there in amongst its pool of filth that it is festering in. Uggh.

I promise to myself though, that if I do finally break this challenge, that I pretty much have to be dialing 9-1-1 while doing it. I have ran myself to the ER before though!

The New Verdict . . .

2009-11-05T18:18:00.002-05:00

Went to see the Infectious Disease clinic guys and had an awesome talk with the MD there. I am to have a PICC line started on Monday first thing, get my first dose of Vanco, and get set up by the home care nurses bing, bang, boom. I will give my own doses, but I think they just want to arrange for my dressing changes and supplies.

The plan is to be on IV vanco and po doxy for two weeks, have the surgery to remove the stimulator but save the leads, go without the stimulator for about a month and continue with the IV meds, get reimplanted with the stimulator, continue with the IV antibx, until officially clear. That is awesome!

Here is the newest pic (warning to Joanne at this point . . . . )

The Verdict . . .

2009-10-31T10:38:00.002-04:00

Well, the VNS is infected. There is a pocket of infected buggy fluid around the VNS. I get to see the Infectious Disease team the first thing next week to talk about nuking the bugs and the VNS will 99% have to come out. Actually, I was told the thing was coming out, but I am holding on by my fingernails that it might get to stay in, but I won't be taking any chances anyway. I will have to get a PICC line and get IV antibiotics until that can happen and afterwards. I am really hoping at least the wires can be left in an an attempt at a reimplantation can be made somewhere down the line, but this all doesn't look good and I might have to accept that.

It was the worse news possible I could hear. I am actually taking it as well as can be expected, because I am trying not to look down the line at my future. One step at a time is all I can take right now.

I am sooooo grateful for the support of my family and friends. It takes some of the everyday stressors that you have to worry about with such a burden so much easier. I won't have to worry about Peanut, Latte or Stella or anything like that.

I plan on working right through the PICC line and antibiotics crap, but I obviously will not be able to work after the surgery and the post op period. Hopefully, I can get back ASAP after that post op stuff is over (I am hoping 4 weeks, but they let you back after 6 weeks). but that might not be up to me. I really hate how Occ Health would want to keep me out longer.

My running milage this week has been fantastic. I've been under so much stress since this has started and running long has really helped the stress and thinking about everything. I hope I can continue running for as long as possible, but I don't know how much I will be able to do after the surgery. I will probably keep up with walking though, until cleared for running.

Another update . . .

2009-10-28T15:35:00.002-04:00

So the below pictures with an explanation of what has been actively going on these past couple days was e-mailed to my doctor (the great one) and he answered me right back, telling me I needed an urgent neurosurgery appointment right away and he'd get back to me. I knew this was coming, but when the sudden realization of what was going on came upon me, I got all shaky and felt sick to my stomach. I then went for a run.

Running is great. It was in the rain and almost soul cleansing. Unfortunately, when I came back, I get a voice mail saying my doctor wanted me to report to ER right away and I was to have a neurosurgery appointment (with a different surgeon than the first one) on Friday. Things are finally moving fast, but it is very overwhelming and I am not handling it very well. I have decided not to report to ER tonite, but will first thing in the morning. I have theatre tickets for tonite and we are going out to dinner and I want to have fun and forget this stress first.

VNS update . . .

2009-10-28T11:12:00.003-04:00

Gross . . . its so crappy when you're own body grosses you out. The ulcer over the stupid VNS on my chest has broken over a slight amount and there is this beautiful drainage coming out of it. Lovely. I'm totally disgusted with it. It just makes me sick to look at it that it has come to this. I woke up in the middle of the night to pee, and my jaw was clenched together so hard, my jaw felt sore. I wondered what would have done that, since pain usually does that and I figured I would have woken up to a pain that great and I woke up with just the throbbing in my chest that has been there for almost two years. Its sad that I am totally used to that pain. I wonder if that is what was the pain. I dunno.
I can't go to the doctor right now. I have no one to look after the dogs. I have to work. I have to run. And now this thing has chosen the most content I have been in a long time to attempt to come out of my chest like a little alien. I am so pissed off about this. Uggh. How long can I go trying to forget this is happening to me? At least until next week? I hope I have that long.

PS: The image is not of my actual breast. This is the lump the VNS has made underneath the tissue above the breast. Its like I actually have three lovely boobs. Uggh. That is actually drainage coming from the ulcer site. It is clear (thankfully) with a yellow tinge to it (for all my nursing friends).

Update on the VNS . . .

2009-10-27T10:33:00.003-04:00

So where the VNS is in my chest, there is now a little ulcer directly on top of the skin above where the stimulator is coming out of the chest. The red area is larger and visibly gets larger everyday. It makes me sick just looking at it. I have a dressing overtop of it, but it now just is always throbbing. Uggh. I hope I don't have to wait much longer for this to be resolved. I also don't want surgery to interrupt my running too much. I just don't know what to do about this. I wish this did not need to happen at all. I wish it would all just go away.

H1N1 . . .

2009-10-27T09:59:00.002-04:00

What a farce this is. The hospital is only giving out the vaccine to the ER and the ICU nurses first. They want us to go to the Public Health Units with our ID, but the clinics are closed for the day (after a disasterous opening day yesterday). What's going to happen if a third (for example) of the nurses get sick at any one time? What would happen if a tenth of the nurses get sick? We don't have the staff to cover a floor if one or two people get sick in a day. Management spent all summer in "pandemic planning" meetings? Ya, right.

Three days off . . .

2009-10-21T11:17:00.002-04:00

I am on my first day of three days off. What a wonderful rest I'm going to have! I am working the first weekend in about two years coming up. It sounds like a nasty tradeoff, but I sometimes don't like my days off on the weekend. The grocery stores are crowded, everywhere you go is crowded, because everyone has those two days off. The nice thing about these upcoming three days off is everyone else is working. I find the hospital is very, very stressful during the weekdays, with all the patients going for tests, doctors wanting this done and that done - NOW, etc. Weekends are relaxing and easy. People tend to not come to the hospital for their issues on the weekend - they will generally leave it until Monday, especially when the weather is nice.

Today, I'm going to have my mid week longish run, tomorrow, I'm going to have a smaller distance run, then Friday I'm going to do my long run. I'm just going to do my regular run commutes on the weekend, and pick up again next week. Nice!

Zombieland . . .

2009-10-19T12:50:00.002-04:00

I just wanted to mention a movie I saw last night that was a real fun time. Zombieland is labelled as a "horror-comedy" but the emphasis is on the comedy and the horror is just the backdrop or the situation/setting for the story. It's a movie that you start laughing in the starting credits and keep laughing on the way home. Real enjoyable. The actors are perfectly cast. The one liners are great. The story is great. Nothing too complicated, but real fun to watch.

Great trail run and shopping this weekend . . .

2009-10-18T12:39:00.004-04:00

I was down because I was missing the last 5Peaks trail race on Saturday. It looks as if the VNS in my chest might be ripping itself from the inside out. I thought that wasn't possible, until I noticed the purple and red mark that formed after the last adhesion rip didn't go away, but started getting worse and worse and the pain is now pin-pointed right in the middle of the mark. The mark gets bigger everyday. I've been putting dressings on it just in case and I have an appointment with neurosurgery (I'm hoping it's not the original surgeon) in December. At this rate, I'm not going to be making the appointment. I'm thinking it might be a trip to emerg before then. I am not looking forward to that, but sometimes that is the way to finally get this dealt with. The consent for the surgery to fix the placement of this thing was signed almost two years ago. I need this resolved one way or the other. This is just a real painful way for it to happen.

So, I shouldn't be running on really uneven surfaces right now. I am running on streets with a chest binder to minimize pain (and it's not the most comfortable thing to run in let me tell you).

So what's a girl to do? Go trail running! To the top of King Mountain in Gatineau Park no less! I must say though, there was a lot of hiking and fooling around though. Here are some selections.

Spent some time online rewarding myself for being 25/25 in the 100 day challenge by buying some winter running gear. Got a trail tech shirt from Lulu (I got one last year and loved it so much!), a pair of their ultra tights and a ta ta tamer, got a spibelt, and a pair of microspikes and a running backpack for running back and forth to work. I don't like running with the bag I have now. It is too bouncy and doesn't distribute things well and slows me down. I'll give reviews when I try the things out.

I'm now a twit . . .

2009-10-17T23:18:00.001-04:00

I'm now on Twitter as carrieruns.

Tired . . .

2009-10-06T06:25:00.002-04:00

This is the second day I've got up at 5am. Nasty. The first day (yesterday) I got up early to give another crack at early morning running. Not good. I ran out of streetlights and could only safely run 2.2K before running out of a safe running environment. I just felt it wasn't worth it. I think I'm sticking to my afternoon/evening runs. I just feel fantastic when I run at that time. This morning, I wasn't planning to run, but just got up almost an hour before the alarm went off and couldn't go back to sleep. Uggh. I can't wait until my day off tomorrow, when I can sleep in.

I've hit 1000 km . . .

2009-10-04T15:59:00.002-04:00

I hit 1000 km run in 2009 this afternoon during a beautiful 10.72K trail run! What a great run. You can't beat running through fall colours. A lot of dogs out too.

100 days . . .

2009-09-23T10:19:00.002-04:00

As of today, there are 100 days left in 2009. A challenge was issued on Running Mania (www.runningmania.com) to run every day for the next 100 days at least 20 minutes. I believe that is doable, so today is the first day! I won't report on everyday, but will give updates on how I am doing. Just to update my last challenge, if you look down at the bottom of my blog page, I am almost at my 2009 goal of running 1000K! I might be finishing that goal in September! I don't know what goal to pick now for 2010, but what a change from running between 300-400K in 2008.

I might just do 2010K in 2010.

Uggh . . .

2009-09-21T14:17:00.002-04:00

And that is my Facebook status for today.

After what I thought was a quiet couple of weeks, I have a seizure last Wednesday and one today. Uggh. Seizures suck. I actually knew yesterday that I really pushed last weekend, with running (although they were easy runs) about 19K over two days, and waking up early (for me) for the Army Run. Plumb tuckered myself out and probably brought on today's little incident. Now I feel drained and I'm trying to counteract it with coffee. It never works. Post seizure tiredness does not respond to coffee. It never stops me from trying though.

The Army Run was amazing though. I woke up a little late and I wanted to run 5K downtown to the start line for the 5K, run the 5K, then after the M&G, run home the 5K for a total of approximately 15K for Sunday. Well, I was fussing around the house for wardrobe ideas, because it was cold in the morning, and I knew it would warm up fast during the morning, so by the time I got to the Pretoria Bridge, I saw the leaders of the 5K speed past. And, of course, Colonel By Drive was blocked for the race, so I couldn't have even crossed to get to the start line. Oh well. *roll eyes* No big deal. I saw J race by and she saw me.

I finally got downtown and headed for the pre-half-marathon hoopla. Met up with a few people, saw D and A and C, and a few others. Got to watch the big cannon go off for the start. Wow, what a noise!

Met up with J and J at Starbucks and we walked up to Pretoria Bridge to see the leaders of the half come and cheered on everyone else. It was perfect weather for a race!

I found out that the article in iRun about me came out that day, and I got to see people looking through the magazine at the post-race hoopla. It was a wierd feeling that so many people were reading about an article about what I face all the time. I hope people realize that I try to make all that a small part of my life and not all of it. It's funny how I hide or underscore that part of my life with my running or social friends and now they will all know about it. I also think that I really don't "fit" in as well as running friends because I'm a beginner, and I don't have the fitness level as many of they do. Something like my health condition just separates me more. Socially, you just can't date people if they know about it, and if they do know about it, it just doesn't last long, because you gain another "mother," in my experience. Boyfriends in the past have just become too obsessed over how you are feeling, or the amount of seizures, or afraid something is going to happen. I hate that. It just makes me feel more separated and less "normal." I don't hide it in my professional life, because I do use my health experiences to understand and deal with patients to make me more empathetic towards what my patients are going through. Also, if you are open about it in your professional life, it becomes harder for an employer to discriminate against you, because everyone knows they are doing it and the employer is more aware of hiding anything that might seem discriminatory. They still do it, but just in a more underscored way.

PS: You can read the article here: http://www.irun.ca/issues/article.php?id=203&intIssueID=12#Carrie or pick up the magazine at any Running Room. I want to thank Jo-Jo for nominating me. It is a special thing to think that someone actually finds what you do to be inspiring. I guess it makes me feel all warm inside, but there are so many people that inspire me that I never really thought that other people would feel the same thing about me.

So what is new . . . mechanical difficulties . . .

2009-09-09T14:42:00.002-04:00

Mechanical difficulties . . . how to explain? You can go back in time in this blog and find out all about vagal nerve stimulators and my ongoing problems post-op for this unit for a year and a half now. I find it hard to explain and tiring to explain constantly to people.

Please visit this site to find out more if you are interested in an explanation:

http://www.vnstherapy.com/epilepsy/patient/About_Basics.asp

The implantation of the second unit didn't go as well as the first, and it is believed that the tissue holding it in place broke or ripped, making the device slip out of place in my chest, allowing pulling on the wires that go up my neck. This has resulted in constant pain and tension up my neck from the wires and surgical adhesions (scar tissue) grow around the device and break with activity, also resulting in pain. I haven't had a lot of problems lately - it seemed I had reached a point of enough scar tissue had grown around the device to actually hold it in place for an extended period of time.

On Friday, though, I irritated the wire by patient care at work. The wire is threaded subcutaneously over my collarbone and somehow I stretched the wire and irritated it a lot. The next day, the swelling and pain was spreading up my neck and became very visible. It didn't abate all weekend. I had to call in sick on Tuesday, since the pain and swelling got bad enough to not allow me to sleep very well the night before. I thought it got better on Tuesday night and I was able to sleep. I think the swelling has gone down significantly today, so I'm not as concerned. I just have to learn to be more careful. I just hate that I have to be so careful with this implantation when I didn't have to be the last time. Scar tissue, I guess, isn't so stable and is subject to ripping.

Work is going well. I just hate that I am doing my job as best as I can and am probably doing it better than I used to with a better attitude, but I am still being judged on what I cannot help. It's not in the forefront, I just know it is happening. Paranoia? I don't think so. My next meeting to see how competent I have been this past month is near the end of September. I have done my best. I work surrounded by nurses that have less experience, less critical thinking skills, less caring, less nursing skills, less stress coping skills, less knowledge and I will still never be as good of them because I am epileptic and that is a label that sets me apart, even though it is not apparent to the visible eye and I don't work like I have any deficit at all. It just sucks.

Running is going really well. Dropping down to the 5K at the Army Run has allowed me to love just running for myself, rather than training for something. I have to learn that I shouldn't just go from training programme to training programme, that I should have space in between to rest my body and mind. It is a hobby, not a job. I like the idea just heading out, with a rough plan, and enjoying the time in my head and the space all around. Beautiful!

Thanks for all your comments . . .

Seizures suck . . .

2009-08-28T23:34:00.002-04:00

I just wanted to say that. They just suck. Real. Bad. I wish they would just die - before they kill me. But I know they won't kill me. They will just keep me alive and torture me all my life, like pulling the wings and legs off of bugs and letting them squirm. That is kinda what epilepsy makes me feel like.

:(

Decision made . . .

2009-08-28T17:06:00.002-04:00

I made the decision not to run the Army Half on September 20th, but drop down to the 5K. This makes me very happy. I've been really concentrating on trail running for most of this summer, with the last couple of weeks almost exclusively and it has made me quite happy. Getting back to half marathon training almost seems like a job and not so enjoyable. Since this is a hobby and something that I enjoy, why make it unenjoyable? Just go with what makes you happy, and so I am.

Holidays and trails . . .

2009-08-22T14:53:00.003-04:00

I spent the last week in North Bay, concentrating on running trails, since they were right outside the backyard at my parents' place and the 5 Peaks race was on Saturday (today).

I had a lot of fun, but even though the trails at my parents' place were technical, they were no match for the trails at Camp Fortune. The hills! J said when racing at a ski hill, expect hills and no doubt, there they were staring you in the face when you got there. I knew this was going to be an incredibly difficult race right off the bat. And looking up that ski hill, that wasn't even the worse of it.

The first hill looked more difficult than it was. It was a steady climb at a doable angle. I was surprised I didn't burn myself out at the beginning, but I kept it slow and steady and ended up dragging up the back of the pack by the top with a few fellow stragglers (more about them later). I walked across the first bridge, as it was only a one person bridge and we were warned about bridges before the race being moss-covered. After that, you ended up under tree cover, but the climb did not end. The climb continued, on and on and on. I did walk a couple of steeper parts for only a small section, but kept on running the rest. Slow and steady was the key. Finally, a downhill stretch and I still stuck with my BOP gang and we became a team. We ran along a flat stretch of a stone road and turned what we found out was the wrong way. One girl stayed at the bottom, one climbed halfway up and came back down, and I continued up to the top of the long, long climb. When someone yelled (it ended up being the sweepers) up at us that we had made a wrong turn, I rolled my eyes and headed back down. The group ended up staying together up the switchbacks through the forest. There were endless switchbacks up and up and up. We all ended up walking most of it. The two sweepers behind us were great. Encouraging, offering advice about the trail, talking, a pair that were a lot of fun. The climb up was endless. I had started to make the decision that the halfway mark at the top of the ski hill, I was going to bail. I just couldn't see myself climbing this much over another 4 km. When we finally got to the top of the ski hill, I sat down on a rock at the water station and got a glass of water and said that I was done. No more climbing. The volunteers asked if I needed a ride down to the bottom and I said that I would walk. The sweepers said that if I was going to walk, they would walk down with me, but they were following the race trail. Then I decided, WTF, I'll finish. It became flat and downhill for a bit, and I gained a second wind, and started to run again. Awesome.

The trail was amazing. The trail was really, really technical. Probably too technical for me but did I have fun. There were more climbs after that and it was beautiful to look down from the top of the hills into the valley below. I wish I had brought a camera. When there became more downhill and flat stretches than uphill switchbacks (of which there were a lot), I started to run with more of a faster pace. It was in this area the enduro leaders were starting to lap me. They were amazing! Leaping, flying over rocks and roots. You could hear them yelling, whooping, singing through the forest (_E_, you were one of the loudest!) They were all so fun and encouraging. I fell around that area into a big lump of mud. Awesome! I was now very dirty! Trail running is so much fun! Finally I got to the downhill towards the finish line and got high-5s from people and I leaped over the finish line with flourish.

I don't know what happened to one of my BOP'ers. The one girl I saw at the end of the race didn't finish and stayed up at the water station. She didn't know what happened to the other girl either. She did say that she said she was continuing on. I didn't see her at the end, but I know from the list of finishers that I wasn't last, so hopefully, she was the one who finished behind me. She said her goal was just to finish because it was a big accomplishment for her. I agreed with her along the way but I wish we could have stayed together. The sweepers were great company and were asking about my epilepsy and the weird sounds the VNS made along the way. They started asking when my breathing started sounding horrible, and that's when they learnt about me being epileptic.

The whole atmosphere was great. I much prefer this kind of race over a big road race anyday. I will be back at this race and I plan on being at the 5 Peaks ARK race in the fall.

Dad came with me, as we drove down from North Bay the night before. He couldn't get over how much fun this race looked. He was busy telling me when so-and-so came in, or who needed first aid, etc. I have to thank him for driving me there today for sure.

Happy, Sad, and Happy Day, all in one . . .

2009-08-10T19:34:00.004-04:00

Start with happy . . .

I had an interview today with a magazine! That is all I'm going to say about it until the article comes out. Wait for the surprise . . . if you can!

Sad . . .

I stayed home from work today because of a bad migraine that started last night. Probably because of the humid weather that moved in. It didn't really clear up until noon, but the googly, cross-eyes stayed most of the afternoon. I felt a little out-of-sorts. I kept wondering to myself if I sounded a little crazy during the said interview that I mentioned above.

The dogs and I spent some time outside and they spent most of the time in their new little kiddy pool. Everyone was having fun until Peanut started to get all lethargic and panting heavily. She had drank a lot of pool water (but she usually drinks heavily, just not often). She went to go lay down deep into the cedar hedge. I decided she must be hot and called them inside to the central air. Peanut comes in and continues to pant and circles and lies down and gets up and circles and pants, and lies down and gets up and circles . . . well, you get the picture. It didn't look comfortable. She pees on the kitchen floor (a whole lake!) while I try and get her back outside. She does the same thing outside and wants to lie deep inside the cedar hedge. Her tummy looked a little bloated, but not alarmingly so (as in bloat). She remains lethargic. I take her for a little walk around the yard. She poos. She pees. Everything is working okay. I let her inside, where the same behaviour continues and she looks like she wants to go outside again. I take her outside again. She lies in the grass in the shade. I sit in the grass beside her and give her a big hug. Please don't leave me. I don't know what I would do. Please be well. Please don't be in pain. Please let this pass. I'm not sure I can handle something like this. I'm not strong enough to deal with this. My little yellow angel, please be well. She doesn't look comfortable. I consider taking her to the vet, but I don't know for what. She is pooing, peeing, her ears pick up when I say 'supper.' She has bowel sounds. Her pulse feels normal. I dunno.

I google some signs & symptoms of the most dangerous things I can think of - like bloat. She is not displaying anything like that at this time. I feed all three dogs. Peanut cleans her bowl, and proceeds to lick clean both Latte's and Stella's bowl. We all go outside. Latte and Stella go and play and Peanut sits beside me. I give her another bear hug. Please be well. And she lets out a large burp.

After that, she seems to regain some energy. She chases a frisbee, although not in her usual competitive way. We go inside while I eat my supper. She lies on the floor without the 'get-up-pant-circle-lie-down' thing. She looks comfortable. She falls asleep and starts to fart. And fart. And fart.

Happy . . .
I have never been so happy to smell dog fart.

August has started out alright with a fight . . .

2009-08-05T12:44:00.004-04:00

My first long run of August (16K) was great. I kept it at a easy, comfortable pace all the way through (mostly) despite the heat, sun and humidity. I felt as if I was lagging between the 8-12K mark, but using a half gel every 25-30 minutes seemed to really help. I took only one water bottle and just stopped at corner stores and a gas station for refills.

Stella found a yellow jacket nest in the backyard in a crack in the foundation of the house (that I didn't know was there because it was below the grass). They became really aggressive and stung Stella at least 5 times at that time and Peanut at least one in the nose when she went to see what was going on. Latte stayed far, far away because she's a scaredy-cat (and might be the smarter one of the bunch sometimes). I sprayed water on them, because at the time, I thought it was a fallen paper nest somewhere, but they all just poured out of the hole and flew in an angry rage. I just threw the hose down (still running) and ran into the house.

After a Google later, I poured dishwashing machine gel (lemon fresh!) into the hole and ran water, under the theory that the smell and the soap would make them abandon their nest by the morning. Wrong. They were pissed off all night and into the next day. Yesterday and this morning, I thought I should just wait it out until the fall when they all die off and just mono-caulk the crack or call Denis to fix the crack in the foundation and then the problem would just fade away. The yellow jackets could have their space, and I could have mine.

Wrong. The yellow jackets keep going after and stinging Stella, even when she is no where near the nest. I was hanging the laundry and one started buzzing my face. I don't have an epi-pen here and that made my decision. I Googled a BBB pest exterminator (http://www.bbb.org/) and got Capital Pest Control (http://www.regionex.com/). I gave the place a call and he was here in a half hour. He bombed the buggers! The nest will be 'angry' for up to a week, and he said he would return in one week to see the state of the nest and a possible re-bombing. I have a 3 month guarantee with it for only $126 (including GST). Best money spent in a long time. Problem solved.

Now I have to figure out how I'm going to get the laundry back on the line . . .

Finally a sunny day . . .

2009-08-01T10:52:00.004-04:00

It has seemed like it rained every day in July. Nasty. Now, finally when it is hot and humid, I imploded on a run yesterday. I thought I had myself climatized to heat and humidity, but since it has been so long since there has been sun, heat and humidity in one shot during a run, it just drained me until I had to do a lame run/walk home the last k. UGGH. I'm going to do the same route today to see if I can improve on yesterday because I know exactly where I started to lose it. Hopefully, yesterday was just a fluke.

I was starting to think about other runners and how people impart their running philosophy on yourself. It's hard to tell people that they are wrong imposing their ideas on yourself, but what works for one person, does not work on others. The reason I started running, and the reason I keep running is not the same as someone else. I just find that long-time runners really emphasize getting faster, winning, speed and I don't think these are goals for me. Those are goals for them. My goals are simple. Keep running. Keep moving. Enjoy. Do new things. Go farther. I am not a competitive person. Maybe that is why I am more excited about the trail race in August and no longer the Army Run. I am actually more excited about the Winterman half than the Army Run, since it is more in adverse conditions.

Maybe that is why I imploded on my run yesterday. I knew this idea of other people's expectations and judgments was weighing on me during my run yesterday.

I like running with K. I didn't like running with other people before. I am slower than most runners and feel like, or am told that I am dragging the group back, but I am out there to enjoy myself just as everyone else and don't mind if people go ahead of me. But the theme of imposition of others saying 'we' are running at this pace and I should try to improve to get up to that pace. I don't enjoy running at a faster pace as of yet. I am slowly improving and I am comfortable with that. That is how you keep running. If it is no longer fun, why get out there? I am not competitive. To me, it isn't about the races, it's about the running.

That is why I enjoy running with K. I didn't think I would. She is much faster than me. But her really long runs are 10K. When we go running, I tell her to run at her own pace, and I'll run at mine. We see each other frequently, because she will stop and rest and I will slowly putt-putt up behind her and meet her. (I'm the turtle, she's the hare.) We both really love trail runs. She doesn't like running in races and it's not my favourite thing either. I think the only thing I like about races is the support on a long run and the closed off route, plus the hoopla that goes with it, and meeting other people. I hate the competitive nature of it. I hate that people can run really well and still be disappointed if they are two minutes off a goal time. It would be nice to add someone else to our small group that has the same running philosophy.

Great week overall . . .

2009-07-19T17:03:00.002-04:00

I've run everyday this past week and had a great long run today. Yesterday, K and I had a great trail run out in the west part of the city. The trail in the south-east part of the city had some serious deer flies that basically cut our trail run short. The night before, K, S and I went out and had a great time doing a Haunted Walk of Ottawa and going to a pub afterwards. Great times! Although I was lacking energy just before I left the house for my long run today and wanted a nap, when I got out there, I felt great. I just kept the pace slow and didn't lose gas at the end. Awesome!

At work, I am finally allowed to have a patient assignment, although I still have to work with another nurse. I presented another note from my neuro and the hospital occ health doctor still had reservations about having an epileptic working as a staff nurse. I have told him over and over that I've been a staff nurse for years and it wasn't an issue before. What an asshole. Oh well, I am happy I am almost back to normal at work.

Wolf Trail . . .

2009-07-12T16:56:00.004-04:00

K and I wanted to go on a trail run in Gatineau Park and picked, I believe, the hardest trail to run in the whole park. Wow! What a tough trail. K had it at 8.3 K on her instructions off a website and my Garmin read 7.3K (but wouldn't pick up a satellite pick up until a little bit into the trail, so it might be closer to 8K). The trail was quite boggy in places, had very steep inclines and declines, three or four beautiful lookouts, a path covered in rocks, roots and mud. There were a few little stretches where we were actually able to run, but running or hiking, we passed everyone on the trail. What a workout! I felt like I ran about 15K after that hike/run. My quads and arse are stiff and sore right now! What an adventure! I can't wait to go back.

ETA: Those Montrail Hardrocks worked like a charm. I was sticking to rocks like Spiderman!

Beautiful July . . .

2009-07-05T16:04:00.002-04:00

I just came back from a beautiful long run down the Rideau River pathway to Hog's Back falls and back. What a great day and a great run! I have also signed up for a trail race this week and have been doing some of my week runs on some neighbourhood trails to get ready. I love running trails! I picked up some Montrails and they are awesome trail shoes.

HOT one out there today . . .

2009-06-24T14:26:00.003-04:00

So the new plan is to split up runs when it is really hot out there. I think it is something that is necessary at this time of the summer to keep up the mileage that I need to rebuild for the Army Half without jeopardizing my health. Running in the heat is a little scary with epilepsy, due to the dangers of dropping electrolytes/dehydration/glucose and risk of seizures and the increased dangers of hyponatremia with my anticonvulsant drugs - plus I'm not the most knowledgeable one with regards to nutrition and running. I'm trying to be, but to me, experimenting with all of this becomes a little more risky. I'm totally open to any suggestions, but the generalized advice sometimes doesn't apply to someone with my kind of issues.

I haven't had any problems as of yet, but I think being extra cautious is the best thing.

Beautiful June . . .

2009-06-20T17:43:00.002-04:00

As the weather starts getting better and better, I like to spend more time outside. I am getting most of my runs in, but keeping them short as of right now, but am trying to work on getting a little faster.

My holidays are coming up and I am thinking of a 'staycation.' I am going to start planning out some activities to do around Ottawa that I have always wanted to do, but never had the time. Some of the best museums in the country are here and I have never been through them. I would also like to see the art gallery and go to Gatineau Park. It is still brewing in my mind and am working on the plan.

Slacker week . . .

2009-06-10T12:34:00.002-04:00

Yesterday was another seizure. Seizures suck. They make me feel so drained and lazy. I just don't have any 'oomph' left in my body afterwards. Soul suckers.

This week hasn't been very good for running. Work, and the damn seizure have cut into my run plans. I'm planning on changing that today though.

My back hedge is getting cut down today by my neighbour. I have mixed feelings about it. On one side, my backyard privacy is getting removed and my quiet is going away. Now every time their young sons scream and carry on, its piercing sound disturbs me even more. On the other side, my backyard extends by 10 feet and the mosquitos should be reduced by a great deal now. The sun will be extended by almost 2 hours on my patio. Hopefully, the fence they are planning on building by the end of the month should take care of some of the privacy.

Great day running . . .

2009-06-03T15:33:00.001-04:00

I just finished a great 5K run. I'm back on the saddle and loving it! It is a beautiful day here in Ottawa today and the weather is really helping my spirits. :)

Addendum to today . . .

2009-05-31T17:14:00.003-04:00

I just want to start off again by saying how much seizures suck. Soul-suckingly suck. Just drains everything that is good and right with the world right out of the bottoms of the feet. Get me a knife - I'm about to perform brain surgery on myself (joke - I wish it was funnier).

I feel so blah. I had a very unmotivated run. I barely made it out there. I just made a deal with myself with just going outside and doing 20 minutes. I'm just mentally blah. I don't know why. Okay, maybe I do. I've achieved this Very Big Goal, and now, my head is going - so what? I'm still in the same place I was in before. I'm not an athlete. I don't have this beautiful new life. I'm still taking all these pills. I still have seizures. Nobody is in the kitchen cooking my supper right now. A big cloud did not open up and all my problems are still in my lap. I guess the post-race let down has begun.

I also did something a little stupid. My bangs were getting a little long and I cut them (I always cut my own bangs), but I cut them so short that I look like a Vulcan now. Great. Maybe I should give Spock a call.

So my solution is just to Keep. It. Simple. If I have to, just go for a 20 minute run a day - until I get out of this funk in my head. Stop thinking negatively. Things happen. Continue on. Set new, small goals. Smile. :)

Starting out again . . .

2009-05-31T10:21:00.002-04:00

Well, I've had a week to reflect and rest. I was going to run this week but my body kept coming up with these aches in my bones, so I took this week off. I knew I should start getting back at it when I started getting bitchy yesterday for no reason.

My first half race report . . .

2009-05-25T12:19:00.002-04:00

Dante's Inferno, Pergatory, and Paradise - All In One Race

Preamble

I was surprisingly calm at the start line, me with my fairy godmother. Maybe I shouldn't have taken that Ativan. Nope, it's a real fairy godmother - Jo-Jo, all decked out in orange tuile, multicoloured flowers around her wrist and neck, a sparkly tiara, and a silvery streamy wand. What more could a girl want running her first half-marathon? Cynthia (Framboisine) found us in our corral (how could she not?). She was running with a bum knee and if she was going to run, she was going to be entertained.

Start Line to the Gates of Hell (Hull - however it's pronounced)

I think the start happened when the long 11 minute walk to the actual start happened. I thought everything was going swimmingly - the weather was beautiful, the temperature wasn't too bad, the company was great. The fairy godmother was blessing other runners and spectators alike. We crossed the Claudiere Bridge and Jo-Jo asked, "Is this Hull?" and then the fires from the bowels of the earth sprang forth and the baking began. Hell (Hull for the Locals) Dante had it all wrong. Hell can be only reached by crossing the Chaudiere Bridge during Ottawa Race Weekend during the Half and the Marathon. It is not composed of 9 rings of sin and fire. It is an endless array of hills and turns with relentless heat, and not a stitch of greenery to be found. It seems in fashion in Hell to grow concrete in your front lawn. You know you are in Hell when they serve petrochemicals that they call 'water' at water stations. The fairy godmother seemed at home in this place. She became bad cop while Frambo became good cop. They switched occasionally when I became incoherent in the heat of Hell. I tried to close my eyes and hoped that I would not die in this place, my body swept aside with the discarded gels and Gatorade cups. I don't think the evil fairy godmother and her partner Frambo would let me. They would just wake me out of my near death experience and make me suffer all over again.

Jo-Jo's Phrase of the Race: "I know you are hot and in pain, but I don't care, that's why they call this a race."

Purgatory

Passed out of Hell and onto the Alexandria Bridge. There was such a lovely cooling breeze coming down the Ottawa River. I wanted to stop and let it take all the heat and pain away, but my captors would not let me. The silvery wand turned into a whip and I was herded into Purgatory (downtown Ottawa). I was just happy to see a grade that could finally be catagorized as "flat" or "downhill." Maybe that gel I took in Hell (my first gel - I was that needy) finally started to work, but my legs started to find something in them again and I started into a shadow of my goal pace again. I thought I was starting to feel a little better again along the Colonel By side of the Canal. But it is Purgatory - Frambo's knee started to get aggravated again. My heart sank when I looked across the Canal and saw other half-marathoners on the Queen Elizabeth side getting close to the finish. I knew I had a long way to go until I was in their shoes. Stopped for a pee break in a portapotty just before Bronson Bridge. I thought I was going to have to call medical to get me off because my legs kept holding me down. I told my legs that Purgatory wasn't the place to stay, we had to continue. So off we went. I started to get a little fuzzy in the details after Bronson Bridge. All I remember is swearing a whole lot, with my fairy godmother and Frambo dancing ahead of me, yelling at me not to stop running. My legs told me not to listen to them, that they were silly. Fairy Godmother and Frambo told me not to listen to my legs. I was confused. They kept telling me we were almost there. I knew we were not. So confused. Legs were making sense though, they hurt! But Fairy Godmother and Frambo wouldn't hear of it. I think I hated them then. At 3K to go, I was asking anybody's god would just come and end this or make the finish line closer. Fairy Godmother and Frambo got mini cowbells and started ringing them at me constantly to keep me running. I then asked all the gods to shove those bells up their rear. Tee hee hee. Up ahead, I see what looks like the finish line. I was so relieved. Frambo decided to play bad cop and say that wasn't the finish line. I yelled **** but had little energy to make it loud enough to display my disappointment.

Paradise

I ran to the finish line. It wasn't pretty. Marg was there waiting. Everyone gave me a big hug and I think I cried for a few minutes. I then wiped my tears away, got my aluminum looking stole, received my gold spinny medal and went straight for the paparazzi.

Post-amble

A lot of thanks goes out to Fairy Godmother Jo-Jo who was ON MY @SS the WHOLE WAY. I whined and complained for a large part of that 21.1K and she didn't take it at all! Another big thanks goes out to Frambo, who stuck around for the entertainment and got it in spades! The volunteers, spectators and race organizers were fantastic!

Post Script

My dad was proud of me and said he knew I could do it, but felt sorry for the fairy godmother, because he said that 'you probably bitched and complained the whole way.' My mum has never said she has been proud of me. Not for 40 years. She just realized from my dad how far a half-marathon was. She posted this on her Facebook page that afternoon: (spelling and grammar errors left in)

My daughter who is eptilectic just ran 21.1k in ottawa this am/ am so proud of
her, yes after her operation of a pacemaker she,s been going strong

Nicole died today . . .

2009-05-21T22:42:00.002-04:00

It was said it was pain free and peaceful. So sad. I had mentioned her in a post somewhere below, under "Thoughts about my job . . . ".

4 days and counting until NCM Half . . .

2009-05-20T17:21:00.002-04:00

It's hard to believe how far I've come since last year at this time. I started running May 29th, 2008 and I could only run one minute at a time around the block. Those telephone poles were just spaced too far. Now, a year later, I am getting ready to run my first half marathon. I am nervous because I have placed so much of myself into this goal. I know I can do it though, because I've already done the distance, and I've but 100% of the work into this goal.

Even my year goal of running 1000 km in 2009 is halfway finished. I'm less than 4 km away from 500 km. I can't wait to run the half-marathon, and continue to train for the next one (Army Run in September). Upward and onward!

May . . .

2009-05-08T12:36:00.002-04:00

May just adds a whole different perspective on things. It is easier to leave the iPod at home when the view is blooming everywhere. My runs have been concentrated along the river because of the greenery happening everywhere and it is just so damn beautiful down there. I like running down there more than the Canal. I find there is just so much traffic down there (people and otherwise) that you can't appreciate the scenery as much. There is always a car, bike and crowd of people everywhere. The river is a lot less crowded.

The half marathon is in two weeks. Sunday is my last long run before the half. I'm confident I'm ready and I feel calm so far going in. Work on the other hand, is causing conflict within my calm inner world. Oh well, not everything can be perfect. Let's just say I would take contentment over happiness anyday. 'Nuf said.

Relief . . .

2009-04-30T17:56:00.000-04:00

Just back from a soul-filling 13K run. All is right with the world right now. :)

Need to climb back up on the (proverbial) horse . . .

2009-04-30T13:54:00.002-04:00

I haven't gone for a run since the last post. I think the last seizure really took a chunk out of my confidence. I need to get out there today just to get some humanity back. Seizures don't usually leave me with this much residual 'depressive' feelings because I am so used to them. I don't know why but I don't want to analyze it.

I took the day yesterday to sit outside in the sun and play frisbee with Peanut, Latte and Stella. They had lots of fun and it took my mind off of the darkness in my head. I cleaned the kitchen too, which helped. I am planning an adventure run. I am not pre-planning a route, just going out to run, do an errand, and enjoy the day. Hopefully that will bring up my spirits. :)

Thank you to everyone that left a comment. I have taken them and used them to heal what this last seizure took out of me.

Post ictal thoughts . . .

2009-04-29T00:12:00.001-04:00

I have seizure. I am done. All I can think about is pain. Not physical pain, but soul pain. I feel pain deep in my thoughts. I feel alone and I cannot share these feelings with anyone because no one has a scrambled egg of a mess of a brain as I have. I want to understand what is going on in a plausable way in my head, but there is no answer. All I can remember is a day I was caught in the rain and a thunderstorm trying to find a way to the hospital in North Bay when I knew I was going to have a seizure. There was no way I was going to get there in time and I could not find help on Jane Street. I ended up having a seizure on someone's porch on Jane Street, alone. In the rain - because the porch didn't provide enough shelter from the storm. No one came to the door. That is how I feel right now. Alone. Because no one can help me and sometimes I am tired of being the only one who can deal with this. Alone.
Om . . . Poor puppy Stella. She is trying to curl beside me but she doesn't understand.

PS (added later): I don't know if the above described post-ictal feelings at all, but at least it was raw and what was true at the moment it happened. Edited for frequent spelling errors. Obviously I can't spell or type after seizures.
Sent on the TELUS Mobility network with BlackBerry

17K run . . .

2009-04-28T08:21:00.002-04:00

Sunday I ran 17K. I probably thought a year ago that would never be able to say that without lying. Well, I can honestly say I ran 17K. It's amazing how far I've come. I was sore Monday, mostly my abs and my quads, but 90% of the soreness came from my abs.

Most of the run was on the Rideau River Pathway. I'm trying to run on asphalt/pavement more than concrete sidewalks to save my legs as I get up in distance. It seems to be working, because I have more residual soreness in my legs the next day after long distances.

Quickly getting over leg injury . . .

2009-04-24T10:04:00.002-04:00

I suffered a bit of a setback at the beginning of this week. I pulled my calf muscle in my right leg and had to rest it for a couple of days and ice it. I didn't run for 3 days because of this. I couldn't take any Advil, since I am developing a little gastritis/ulcer from all the Advil I've been taken. It didn't matter, though, because without the Advil, the muscle seemed to recover on it's own. Yay!

Had a seizure. Ho-hum.

The days are getting warmer and warmer. I can't wait to start complaining about the heat.

The days are getting closer to my first half-marathon. I am getting nervy! I can't place my finger on what makes me the most nervous about the whole race experience. I think it is the crowds. I know I can do the distance.

Disappointing long run . . .

2009-04-13T10:46:00.003-04:00

Yesterday was a disappointing day. I ran only 15K when I was supposed to do 16K. That might not seem that bad, but the first 2/3rds of the run were right into the wind and it just sucked the energy right out of me as it continued. I just couldn't get any sort of ideal pace up. I just remained so damn slow throughout. The only time I picked up the pace was when the wind was behind me for a short 5K and by that time, I was just drained and couldn't capitalize on it at all. I am just going to be so damn slow through this race. If I keep this up, it is going to take 3+hours to complete. I am keeping up the endurance, but am not improving on speed at all.

The only thing that kept me going was the music on my iPod for the most thing. That kept me concentrating on moving forward. As soon as I lost my concentration, I was thinking about my breathing, my feet, my hips, my legs, how tired I was, etc. I also kept thinking about not running the half in May - that I wasn't ready. I'm not sure if I'm burning out, if this is just an small bump in the road, if this is physical exhaustion - I don't know. I might be overreacting. But with this half coming up fast, I should figure this out by this week. I'm running out of time.

I know I left this 'Half-marathon to complete' programme goal time up in the air; I did say I wanted to do it in the allotted time limit. I know I just wanted to complete my first half and just to think that I've been only running less than a year, but as training for this has gone so well, and I have been steadily improving - I've actually formed a goal time deep within my malformed brain of 'sub-3.' I wanted to do this first half race at a comfortable, conservative, enjoyable pace, which to me right now is 8:30/km, but this last run was horribly higher than that. I was going to concentrate on a better time for the Army Run.

I'm going to spend the next week just working hard, hitting all my runs, and reevaluate after next Sunday. If I still feel like this at the end of this week, I may make this week the cut-back week and decide that this is all mental. I know I can finish this. That is not the issue. I can run this like a zombie. It is my mental attitude I need to work on. That is my strength.

I'm going to cheer up this post with some more doggie humour. Stella ate the cord of my blender and my Nike Triax watch band this week. I haven't been using the blender this winter, but I use the blender to make fruit smoothies during the summer. I guess that is not going to happen. This is why I need to start buying cheap appliances now. The crappy thing about the Nike watch (the heart rate monitor strap is fine) is that I can't just go out and get a new band, since it is a completely single unit. I was exclusively using the Garmin now, but was using the Nike watch for work. Crap. It now has become a pocket watch. She started pooping black and was a little worried she finally ate something that caused some damage and she would cost me $$$ at the vet, but the black had red plastic flecks in it that matched the watch band. She was back to normal by the evening. Cleaning up the backyard, I found at least 5 or 6 dishwashing sponges in pieces in the backyard poo-poo mess. I ended up buying some cow leg bones at the pet food store (PetValu) which really grosses me out (I'm a damn vegetarian), but she hasn't chewed anything non-food since they were bought on Saturday. I hope that is the (gross!) solution to her driven need to chew everything in sight.

No seizures this week. Actually, I should state that no seizures got far. The stimulator took care of one. I have noticed these uncontrollable tremors of my legs and arms after that seizure that didn't go far. The pain over the surgical area has gotten a lot worse this week. The adhesions that are attached to the stimulator are horrible. My chest looks more and more malformed. I ran out of duct tape to put over it. I am afraid the pain will not go away this time or I won't get used to it again. I am trying to lay off the Advil this past week because my stomach feels gross again. It might be time to switch over to the Tylenol #1s again. I hate narcotics though. I haven't taken any lorazepam for a month either. I hate taking so many meds just to prevent seizures that are going to happen anyway. My mum and dad keeps researching epilepsy surgeries. I wish they would stop telling me about them and just understand my reason for not going through it. I guess that makes them feel better.

Thoughts about my job . . .

2009-04-04T11:40:00.002-04:00

Today I got a nice little present from a pharmacist at work. She bought me a latte from *$ for setting up a printer on her computer at her work station. As a nurse, you have to be a plumber, an electrician, IT, McGyver, therapist, maid, cook, problem solver, saviour, etc, etc, I find. All things to all people. I just want to fix things and make people content.

I don't talk a lot about my job on my blog. Maybe in order to be sane, you have to leave everything there, "compartmentalize" the stuff that goes on there and don't bring home the drama and tragedy that numbs you to it. I don't know if that is good or bad in the long run, but it gets me through the day, and I feel I better handle it than some. I've seen what it's done to people I work with. Divorce, high blood pressure, mental problems, anger, stress, relationship difficulties. I don't want to bring it home so it consumes me and live it beyond the confined of the hospital. People should only be exposed to that kind of stress a couple of times in their lives - the death of a loved one, a close call, a serious health scare, an accident. We are exposed to this on a daily, sometimes hourly basis. I've seen evidence of what it's done to me. Higher blood pressure at work, stress, anger, more seizures, lack of sleep, previous lack of care about my own health before I started taking care of myself. Running has really helped and concentrating on putting goodness and nutrients rather than crap into my body. The dogs have helped. It makes me realize how precious our human life is and how fleeting it is. We can go for an instant from nurse to patient, to deceased. How many dead peole have I talked to right before the end? How many last words have I heard? Too many.

This reflection has come from the news that a former fellow nurse much younger than myself is dying of cancer. She has two children that are so young now, that they will not remember her when they grow up. That is sad.

Something I found on Facebook:

"Patients aren't always satisfied with how well nurses communicate," a recent Medicare survey revealed. Well, nurses had no trouble communicating with me after I defended them (last) Sunday. Nurses from recovery rooms, coronary care, pediatrics, geriatrics, ER and Trauma units e-mailed me across the country. Here's what they had to say:

Come walk in our shoes for a 12-hour shift. Come see the joy, the tragedy, the comedy, the 100 ways we are pulled and pushed, then rate my "pleasant greeting", "answers call light in timely fashion", "states name of patient."Use the bathroom now, because you might not get the chance again until your shift ends.

Wear comfortable shoes. Don't worry if they're clean. They'll end up with blood and vomit on them.

We are the patient's advocate, the doctors' eyes and ears, and everyone's scapegoat. We can page your doctor but we can't make that doctor magically appear. We check your stitches, wipe your blood, drain your pus and empty your bedpan. Nursing is a tough job, but we're tougher. We've been yelled at by administrators, supervisors and doctors. We've been kicked, slapped, punched, spat on, and sexually harassed by patients in various states of delirium, mental illness, arrogance, and intoxication. We've even had chairs and food trays thrown at us. We work mandatory overtime, weekends and holidays. We eat Thanksgiving and Christmas dinners with coworkers.

We deal with families who ignore visiting hours, bring food to patients on restricted diets, and insist on staying the night even though it's not a private room. We deal with the Florida son who orders us around to show a parent he's neglected for years that he cares.

We cannot be at your side every waking minute. We have 10 other patients. We cannot answer 5 call lights at once. We can't stop doing CPR on a patient because you ran out of tissues. We are not maids, beauticians, or cocktail waitresses. We are professionals with college degrees. We hate that we can't spend more bedside time with you.

Swearing at us will not make us move faster. Taking better care of your health would help. Quit smoking. Lose weight. Start exercising. Stop drinking. How do we survive? We ignore the nasty comments, the demanding relatives, the crazy staffing grids. We count to 10 before speaking. We pray every morning for strength and wisdom, patience and empathy. We drive home tired and frustrated, telling ourselves over and over, "I'm not the nurse I want to be, but I'm the best nurse the hospital staffing allows me to be." We fall asleep praying for the ones who won't survive the night. There is no finish line, ever.

Nursing is demanding, fulfilling, and we can't imagine doing anything else. Nothing beats washing blood and glass off a car crash survivor, stabilizing a broken neck, saving a diabetic's leg, keeping a cancer patient in remission. The day we send a patient home we relish the unbelievable resilience of the human body and spirit.

We did not become nurses for the hours, the salary, or the glamour of it all. We became nurses to make a difference. We don't ask for much. One sincere Thank You makes all the thankless hours worth it."

PS: I wish Nicole & her family all my sincere sympathies. I wish things had turned out better for you. You deserved better.

No med changes . . .

2009-04-02T14:46:00.002-04:00

I was at neuro clinic today and I don't have to change my meds at this point. That makes me happy.
Running is going well, I'm getting better and better, slow and steady.
Not much else to report. :)

Consistency is key . . .

2009-03-25T10:03:00.003-04:00

I think the best developments in my running have come this month. I have built up to 12K with absolutely no taxing my system at all and it has come through consistency. I have stuck to the plan and haven't been missing any runs. I have also become a little more consistent in other avenues of my life - keeping my medication schedule fairly stable and eating smaller, more frequent snacks/meals. The only thing that has suffered is housework, as Stella likes to tear up paper lately. I have just resorted to cleaning one room at a time and just pick up the paper as it falls. With the snow melting and the mud being tracked in with three dogs, what's the point of mopping every day?

Speaking about the dogs - last night, while I was sleeping, the dogs started jumping around at the foot of the bed, either wrestling or fighting over spots and the foot of the bed collapsed, which led to the head of the bed breaking through the floor air vent. This woke me up in a hurry and it is just so stressful to be standing in the middle of the night, looking at the destruction that happened in just a few short moments. I tried to go back to bed on a collapsed bed, just for the remaining few hours, but I couldn't sleep on such a steep angle. I tried to put the mattress on the floor, but the steel centre bar of the bed was the only thing that didn't collapse, and this is what was keeping the mattress off the ground, but led to the mattress dipping to the right or the left if there was pressure put on those sides.

Fine. I was up. I took a nap on the couch in the living room, but was just too tired to go to work. Exhausted. Drained. Eventually, I got enough energy to tackle the bed, to see if it could be salvaged and put back together, or else throw out the bed and put the mattress on the ground. I slowly took everything apart and discovered the foot of the bed was weaker because it was put together wrong. I straightened out some of the bent bolts with a hammer, and put the bed together properly (while taking frequent rests since I was too tired to concentrate and got frustrated). After it was all together, I took another long nap.

I slept in the bed last night and everything was fine. But fighting and fooling around are no longer to be tolerated by doggies in the bed.

Wonderful run today . . .

2009-03-17T20:28:00.002-04:00

What a great day for a run! Work was busy and quite intense today and I didn't get to leave the hospital for my run until almost 1600. Once I was out there though, the weather was beautiful and sunny, at a high of +10 C. My run was good, but my legs were still quite sore from my long run on Sunday. I felt really slow, but picked up the pace in a couple of places just to get the cobwebs off the legs. All in all, best run during work yet. The snow is melting fast. I want spring to start soon.

The pain is bad lately on my VNS surgical site. I can see a lot of adhesions that have formed and are pulling in the surface tissue. Advil and Tylenol #1s is trying to keep it at bay, but my gut hurts too. These next couple of days off, I'm going to totally lay off the pain killers and hopefully settle the stomach.

March has been beautiful so far . . .

2009-03-13T18:49:00.002-04:00

It's been a successful month so far. I've hit or exceeded all my running goals so far with ease. Things are getting easier and my confidence is building. I ran to Best Buy today and got an iPod Nano and an iPod Shuffle today to replace my old iPod Classic 5th-generation, which died last week. I have really missed walking and running with music and everyday tasks around the house. I am looking forward to getting back into the groove.

Weight loss thoughts to date . . .

2009-03-05T16:27:00.003-05:00

I posted something similar on my journal on Running Mania (http://www.runningmania.com) and I really should take credit for the hard work I've been putting in. I hope I can inspire others to either take up or continue improving their own health and fitness to become the best person they can be, for the benefit of themselves and others.

I am getting ever so closer to the 90 lbs lost since January '08 - right now, at 85 lbs lost. I have lost exactly 10 inches off my waist, 8 inches off my hips, and 9 inches off my chest (gulp!). The ultimate goal is Bettie Page's 36-24-36, which is the reason why I am using BPs pics as my avatar on Running Mania all the time (if anyone really wanted to know). Her weight was 128 lb, and my ultimate goal is 130 (I am also the same height that she was).

At the rate I am going, I still have a lot more work to do, but it is now nice to know that it's not just a pipe dream. The measurement I am most proud of - I have lost 17% of my body fat! No private gyms, nobody monitoring my diet, all real world, no private trainers, no TV cameras - all me, all the time. No surgery, just moving my ass - first walking, then running since last May.

The work is still ongoing. I still have a lot of work to do and it has been fun so far. I know that, along with losing all this weight and improving my fitness, I have made a positive life change and there is no going back. I just feel better - more vitality! What running does to your self-esteem is amazing! If you can complete that distance, run up that hill, there is nothing that can stand in your way!

The journey continues . . .

???

2009-03-04T16:53:00.002-05:00

Could it be? Could it be that the elusive thing called "spring" might be around the corner?

I went running this afternoon and I was dressed - TOO WARM . . . could that be a sign? I also don't want to jinx anything, but on my Weather Network jiggy on my laptop, it says that Friday, Saturday, Sunday, Monday and Tuesday are all going to be above zero. Wonderful!

Seizure on March 1st. Nasty one too. I blame the pharmacy for delivering my Keppra 3 days late. They always make it sound like this is the rarest drug on the face of the earth. NO ITS NOT STUPID PHARMACY PEOPLE!!! Do your job. Idiots.

Spring is coming! Everyone jump for joy!

March is Epilepsy Awareness month . . .

2009-02-27T14:01:00.003-05:00

March will be Epilepsy Awareness Month in Canada. I am one of the 30% of patients where my seizures cannot be controlled by treatment. With epilepsy research being seriously underfunded and awareness limited, I will likely die from my condition. Please feel free to read the following facts and visit the following websites:

www.cureepilepsy.org
www.epilepsy.ca

Epilepsy Facts (from CURE)
Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.

Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.

There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.

Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.

For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

This was so yummy . . .

2009-02-25T22:56:00.001-05:00

Vegan Jambalaya

2 cups of brown rice
1/4 cup of wild rice
4 cups of vegetable broth
1/2 cup of dried TVP chunks
1/2 cup of vegetarian bolonaise sauce (PC Blue Menu)

Put the above ingredients in rice cooker and set to cook.

2 tablespoons canola oil
1 shallot, finely diced
2 cloves garlic, finely diced
1/2 cup celery, finely diced
1/2 cup carrot, finely diced
1 red pepper, finely diced
1 can of black beans, drained
rest of bottle of vegetarian bolonaise sauce
pepper to taste
cajun spice, to taste
tabasco sauce, to taste

1. In wok over medium heat, lightly brown shallot in oil. Add diced garlic, celery, carrot, red pepper. Cook until soft. Add black beans, sauce and spices and simmer under low heat. 2. When rice is cooked, add mixture in wok to rice. 3. Enjoy!

Makes plenty+++ Pack for lunches or dinners.

Senators game last night . . .

2009-02-25T10:45:00.002-05:00

I went to the Senators game last night with Kelli. We had great seats - Section 101, row P, seats 15 and 16. Right behind the Senators goalie, Alex Auld. Kelli got them from her friend from her hometown, who is the Director of Communications for the Senators. Hockey is very boring on TV, but very exciting live. They have short entertainment spurts during the commercial breaks and in between periods. The arena is very impressive. I was very impressed with the building itself. I bought us two $9 Heinekens. Crazy.

Running since pneumonia is going surprisingly well. I'm picking up and adding milage like I wasn't even sick. I am not liking this little lapse back into winter though, but we are expected to get above 0 Celsius tommorrow.

Stella has been getting back into her destructive self again. I thought that this was slowly going by the wayside, but the past two times coming home from work, she has destroyed stored furnature down in the basement (which is now closed off to her) and last night she destroyed a couple of photo albums (Peanut & Latte's baby albums) and started chomping down on the TV stand. I've been coming home for lunch on 12 hour shifts (and incorporating it into a small run) to alleviate her anxiety (if that is what it is - I'm not sure it is yet) but last night I was just gone for an 8 hour shift. She is more hyper than usual lately. I really don't want to start crating her during the day when I am gone, in case that adds to her anxiety, but I soon might have too. If I leave thinking I have dog-proofed everything, she just goes for stuff she hasn't gone for before.

No seizures again since last post. I am starting to feel a little anxious myself, since it's been a little while, and I'm due. The monkey's back on my back, waiting to strike.

Running at lunch . . .

2009-02-21T11:59:00.002-05:00

Yesterday, I got to run at lunch to home and back to work. I'll be doing this more often as the weather gets warmer around here I think, as it is a great brain refresher. It was a cold, very windy day yesterday, and I found I was walking over a few deep snowdrifts. I also should have brought a change of clothes, since I was doing a very easy jog, as not to get myself too hot and sweaty. It's nice to be running again and I seem to have recovered quite well from pneumonia without any apparent loss of fitness or energy.

I am so happy and honoured to have Jo-Jo (aka "Bunny Girl") offer to be my pacer during my upcoming goal race, the NCM half marathon. It will be quite refreshing to have her with me, since I was starting to feel increased anxiety about my first half marathon, even though it is 3 months out. I just want to have fun and get over the finish line during the allotted time. No stress involved. Once the first is over with and I know I can finish one, the second will not be so anxiety-ridden.

Pneumonia update . . .

2009-02-17T23:08:00.003-05:00

I am feeling much better today. I went to work and walked there without too much deficit. I was occasionally having productive coughs, but nothing that could not be handled. I really think I will be able to do a short run tomorrow.
In the meantime, the Blackberry went for a crap, so I need to go to the Telus store and get it exchanged. I was supposed to go to the doctor, but I don't think I'll be able to fit that in. I have to go to the hospital and get my CPR refresher course and I have a Maniac meet & greet in Kanata all tomorrow. I will not be able to do all of these things, plus my run tomorrow, since I do not drive and all of this takes time to go from one place to another. So much to do in one day and so little time!
The furnace is off and I had to call the furnace guy and am waiting for the off-hours guy to show up. Supposedly, someone is supposed to be here in 3 hours, which makes arrival between now and midnight. It is getting cold in here!

Can't believe I'm still sick . . .

2009-02-13T16:02:00.004-05:00

This pneumonia is kicking me in the ass. I get strength one day, and then I'l laid up for the next three. I went to work a couple of days ago for the first time since I got sick, and when I got home and ate supper, I just went outside and kept throwing up and throwing up. Then, for the next day, I kept coughing and coughing (lovely chunks for all of you that love this kind of stuff) which made me quite short of breath and nauseated. I just can't catch a break. I feel better today, just drained and I have absolutely no appetite. I am a little nervous to do anything involving too much energy today, so not to start up any coughing. My boss had called and wanted me to go to a CPR refresher course, but I bailed at the last minute because I didn't want to walk over there and start coughing and barfing. All I want to do is improve and get better. I want to get some energy back. I can't live like this for another week.

On a brighter note, I ordered a Garmin Forerunner 205 today and can't wait to start running with it once I kick this pneumonia is the ass. I got a new fuel belt with it too, all from MEC (http://www.mec.ca/). The fuel belt has a double water bottle holder at the back (one for water and one for my mix of Gatorade/water) and lots of little pockets for gels, cell phone and such.

Luckily, no seizures this week.

First run since pneumonia . . .

2009-02-11T15:50:00.003-05:00

My stats looks horrible for the last week or so. My first run today was sad, but I ran! Had to walk a lot and cough big, giant lung cookies, but I did it! Hopefully, this is the first step to clearing this pneumonia up faster than expected. I really don't want to be coughing up crap for another 2 weeks. I want to be finished this by the end of this week. I'm so impatient when it comes to recovery from sickness!

Recovering with blog redo . . .

2009-02-09T13:40:00.003-05:00

So I have to do something while recovering from this pneumonia (no surprise, that's what I've been sick with), so I've done some redesigning around here. Nothing fancy, but wanted to add some little do-dads here and there.
Redid the header, changed the layout, Added some permanent pictures of the girls to the side. I hope you like!

Still sick . . .

2009-02-06T10:56:00.002-05:00

I am still sick with this horrid chest cold. I think this is the worse day yet. I start coughing and coughing, until I almost throw up. Nasty. The codeine is coming in useful today.

I haven't ran since last weekend and I haven't done any worthwhile physical activity since Monday. Blah. The body really, really wants to get out there, especially since the weather is looking more and more favourable, but the lungs have been taken over by an evil entity. I am so running tomorrow, no matter what. If I have to do 1:1s than I will. The great thing is that I have been feeling stronger and stronger with each run and have been seeing improvements lately. I am not worried falling behind in my half-marathon plan, since I changed the plan. I am presently running ahead of the plan, so the amount of runs I have missed this week with being sick is not concerning me at all. I have room to make that up. Plus, spring is going to be so encouraging to get out and run, after running in such crappy, cold weather all winter.

At least Peanut, Latte and Stella are having a good time with me being here all day. Latte and Stella are playing together more. Latte is starting to become more and more confident with playing with Stella. It's good to see. I weighed Stella yesterday, and grew a little concerned about her weight. She is at least 10 pounds underweight for a female puppy her age (and that is 10 pounds underweight of the lower end of the weight range). She is eating like a pig and she is quite active, but she does look skinny for a Lab. I would rather her be underweight than overweight, but because of her activity level, I increased her food to see if she can just add another 5 pounds to her frame. I would be comfortable with her being only a couple of pounds underweight rather than a full 10 pounds underweight.

Luckily for me, I haven't had a seizure with this chest cold. The last time I had a seizure with a serious chest cold, I got pneumonia (probably aspirational), about two years ago. That was nasty. I had to go on antibiotics and everything and almost got hospitalized. I could see why people die of pneumonia. You are so aware of every breath you take because it draws so much energy to do so. I am really pleased with the amount of seizures I have been having since December (I have only had two seizures since then). I haven't had a lot of pain from the surgical site either, but have felt the wires pull in my neck, which isn't painful, but just uncomfortable.

Added a homemade running "ticker" . . .

2009-02-03T13:59:00.004-05:00

As I am no longer reading the volumes of novels as I was last year, I have added a "running ticker," made by me at the bottom of the page. I am still looking for a similar ticker or widget that will be this easy and uncomplicated. It will be manually updated at least once a week by moi, until I can find one that can update more easier. It's a real good excuse to post more than once a week though.
Feeling a little run down and fighting off a cold today. Called in sick to work because I have a cough and chest tightness that has taken over the upper part of my lungs and lower part of my throat. I am hoping that intense hydration and rest might fight it back, since I feel it hasn't taken hold yet.
Peanut, Latte and Stella are quite happy with me calling in sick. I, on the other hand, instead of resting, am looking at all the work I should be doing, like laundry, dishes, sweeping, tidying, . . . I am dying to run today, but that really flies in the face of resting and hydrating and helping my body fight this off. I might do some Power Yoga today.

25 random thoughts about me . . .

2009-02-01T10:22:00.002-05:00

25 random thoughts about me... as from Facebook:
1. I wanted to be a coroner growing up.
2. I started out university planning on becoming an environmental lawyer. I left university wanting to get into medical school, but had to wait until my health got better.
3. The last thing I ever wanted to do was nursing. I was considering engineering. Nursing was chosen because my gramma told me I was meant to be a nurse.
4. I miss my Gramma Marcotte every day.
5. I've considered ending my life several times because of my seizures when I was younger.
6. I love being alone.
7. I cannot sleep unless my dogs are with me.
8. I'm terrified of flying and of heights.
9. I love my job.
10. A doctor told me that I have a mild form of Asperger's Syndrome. I don't believe that.
11. Don't ever touch my toes. Ever.
12. I have never been in love. Ever.
13. My epilepsy controls my life more than I let on.
14. I played violin in high school.
15. My life insurance beneficiaries are my dogs. Really.
16. I cut my own hair.
17. I broke someone's heart and still feel a little bad about it, even though it was the right thing to do.
18. I didn't do my taxes last year, but I know I don't owe anything.
19. I can have surgery (a right temporal lobectomy) that might end my seizures, but I refuse on the fear I will be a different person.
20. I have a real hard time meeting new people. I feel nervous and awkward inside.
21. I have a tea cup collection.
22. I rarely watch movies. I'd rather read the book.
23. I don't believe in ghosts.
24. The idea of eating meat horrifies me.
25. I fear my parents' no longer being there for me.

Very Successful Week . . .

2009-01-24T09:24:00.000-05:00

I just want to mention my good karma this week. I have followed my half-marathon plan 100% so far this week. After my 10K long run tomorrow, I will have completed my first complete week! Good for me! I discovered that if I remain flexible with work obligations, not stick to doing the exact activity to be done on that exact day, adjust distances to the weather outside, but get something done that day, regardless of weather, it can actually be successful. It adds some self-confidence and a sense of achievement to myself after this week and that I can make it to the start line prepared. I will keep this up!

Also, was "supposed" to have a seizure yesterday, but sent it packing with the stimulator! I used the magnet successfully and felt so good about that. That is the first time that has happened in months. I haven't been able to "abort" seizures since the new unit was installed last year and was worried deep inside that that ability was gone.

I got my house cleaned by Elvira. I have always been uncomfortable paying someone to come and clean my house - a job I should be doing myself. She was great! She did the same amount of work so thoroughly and detailed in 2 hours that I would have done sloppily and half-assed over a couple of days. So worth the money, because now I am sitting in a clean & organized house that has given me a sense that I am also organized.

Frigid . . . .

2009-01-17T18:12:00.000-05:00

It's been a very cold week, so much so that I have been stuck inside and screwing up electronics and spending humungious hours trying to fix them back to normal (not on purpose - I think). I screwed up my iPod, I screwed up my Blackberry, but now they are fixed, just in time for the weather to dethaw a bit. I had a great run today. The sun was coming through the clouds like a light shining through a foggy window. Not cloudy, but not bright sunlight either. I can't wait until my long run tomorrow.

Starting out on my plan . . .

2009-01-08T11:57:00.001-05:00

I started my half-marathon training plan on Monday and so far, so good, except for the typical epilepsy bump-in-the-road. It's just a reminder that I might have to account for a little more than the average person. But I digress . . .
I started a log on Running Mania (www.runningmania.com) also and have been documenting my training plan there too, but I will focus not so much on the running here, but the trials and tribulations to go through. I hate bothering people with the various hardships someone like me would go through in such a plan if you are not interested, but here, this is mostly the purpose of this blog.
Well, I haven't been having very many seizures lately. Two in December (and early December) and just as the first week of the training plan takes effect - BANG. It was the second day, my first 5K run of my new plan. I was so disappointed, but really, I don't know why I would be. My plan was created to absorb all the little seizure and surgery related crap that I go through and no one else would go through. I work really well with a schedule and a plan layed out, and have recovered quite well the next day, performing two items of the upcoming plan on the same day. Easy. Seizures are just a reminder that epilepsy will always try and trip me up and my job is to not to let it do so.

On a related note, I have to discuss my ongoing disturbing feelings of something that happened lately in the "celebrity" world. I am not one to check up on what these people do in life. I sometimes look at pictures of what they are wearing at work if the mag is open, or it might be on the news and I half-listen to it. I really feel these people are rewarded for doing very little and contribute absolutely nothing to the general welfare of the population as a whole. Most of them are not using their little-earned "fame" for the betterment of mankind. Some are, and I applaud them for it. Some of them do contribute, but at outlandish money being given to them for appearances, more can be done for charities by some of these people. Okay, I'll be off my soapbox on "celebrity" for awhile . . .
The real purpose of this is the current John Travolta's son's death thing. What goes on in that family is none of my business. Really. It's sad that a child died - for anyone, regardless of fame. What bothers me, as a person with epilepsy, is the fact that he wasn't being medicated for that condition. I have been in ICU twice - TWICE for the same reason. My reason was due to lack of funds to pay for my treatment. Sad, but true. Why would you gamble with your son's life because of some wacky religious convictions? I'm all for religious freedom. I'm Buddhist in a Christian-dominant society - but my religion doesn't dictate to risk my life or others for beliefs held by that religion. It also sounds like the son had about the same amount of seizures as I do, abet he wasn't medicated and I am, so in fact, I might be in a more serious boat that that child is. I know that if I do not take my meds, I will eventually have a seizure and die. Who were the neuros that told this family that it was okay to not take your anticonvulsants? They are not psychotropic meds!

The more they talk about it, the more it makes me angry that this poor boy had to die of epilepsy when I fight to live with epilepsy.

2009 . . .

2009-01-02T20:38:00.001-05:00

2008 ended with alot of small stresses that accumulated into something overwhelming. I kept my cool, and made a list and conquored each one individually, and now I feel so much better. Self-help psycho babble sometimes helps. Yay for me!

X-mas holidays is over and now I can relax. It stresses me out more and more travelling somewhere else to visit. I love the parents, but the process of packing belongings and furbabies, moving from a place to a place, unpacking belongings and furbabies in a distant and not-so-much-home-anymore place and trying not to interrupt their lives, going visiting others, etc. can be quite stressful.

I got my snowshoes for x-mas and it is quite fun to go into the bush and walk on top of the snow back far in the unaccessible snow-filled woods. Great exercise too.

I have made up my plan for my half-marathon in May. The plan is adapted from a Hal Higdon novice half marathon plan for 12 weeks, which I extended to 20 weeks. I want to give myself every slight chance to get back into the plan if my surgery date falls in the training time. If I don't have surgery before now and May, at least I will be well prepared. If not, I can try and get back into it if my pain can be controlled and my healing goes well. I am feeling really good about the plan and it seems quite reasonable to get through. I always feel good about things when they are down on paper. It looks like it might easily fit into my work schedule too and days can be switched around if need be too.

What a change from this date last year. I don't think I was in a great place mentally or physically last year and I even was thinking about dying last year. I have had a complete turn around, and I hope it just gets better and better from here.

Recent pics of the girls . . .

2008-12-17T11:56:00.000-05:00

Just wanted to inject my girls into the blog, I think they have been absent too long and they are such a big part of my life . . .

Peanut:

Latte:

Stella:

Reflection . . .

2008-12-17T11:40:00.000-05:00

I think I'll go further on reflection on January 1st, but I was just thinking about where I was when I first started this blog. I was a scared, sick girl, worried about her own mortality, whether I would actually live until 2010. Now I am a confident person, 75 pounds (and counting) lighter, a runner, training for a half marathon sometime in 2009. I am still waiting for the surgery to fix the adhesions in my chest from the stimulator, but I know I can accomplish my goals and have gained much in the past year.

I went to a Running Mania (www.runningmania.com) M&G on Monday night, and although, being still overweight and running less than a year, I still feel a little out-of-place and out-of-my-league, I always feel welcome and as I lose weight and improve my running, I start feeling a little more like I 'belong,' maybe more here than anywhere else.

The OC Transpo strike have limited my shopping excursions around town for groceries and x-mas shopping. I have had to buy all my gifts online. My dad's gift is a great hunting vest that has tons of gear pockets from L.L. Bean (www.llbean.com) and my mum's gift is a great triathalon vest and 'yarms' from Robena (www.robena.ca). Alot of her horse riding outfits look similar to these cycling vests but are not made of tech fabric, so I wanted her to try out tops like this in the heat of summer. I think she'll like it.

Groceries are more problematic. Although I take the bus to groceries and a cab back, the traffic is just too much to do these trips around now. Hopefully, during the holidays between x-mas and New Year's, the traffic will have slowed down some to make this possible. I do have enough dog food for another week or two and am still getting my weekly deliveries from Life Organic (www.lifeorganic.ca) so there is always plenty of healthy food in the house. I am walking down to the Shoppers Drug Mart weekly to pick up organic soy milk also (yay!). I do hope this strike is over soon. It is just so disruptive to life in this city right now.

Core/Resistance/Strength Programme . . .

2008-11-26T22:21:00.000-05:00

A request to post the new core/resistance/strength programme I have been following (thanks Sonia!). It is a combination of some articles that I have read, a lot from one of the trainers at the gym, and some of my own combinations. All I have been using is two 10 pd hand weights, one 10 pound leg weight, a resistance band, and a balance ball. The order is just my own, feel free to put each exercise in any order that suits you. The reps are my own at this time, feel free to start where ever you want. I increase the reps when they get easier to do. The whole program usually takes one hour. I sometimes take two rests in the midst of this, because I find it tough. I also play music loudly so the neighbours can't hear me swear real loud.

Exercise 1: Benchpress with dumbbells is just lying on your back and pushing up the dumbbells to the ceiling at the same time. I have been doing 3 sets of 10 each. I have been using 10 pd weights.

Exercise 2: Sit ups are self-explanatory. I have been doing 3 sets of 25 each.

Exercise 3: Lateral raises are tough! Keep your arms straight and lift up to shoulder height and back down. I have been doing 3 sets of 8 each with the 10 pd weights.

Exercise 4: Leg extensions with leg weights. I sit on a bench or chair and wrap the 10 pound leg weight around my ankle and just raise my lower leg off the ground to straight from the knee. I do 3 sets of 15 on each leg.

Exercise 5: Leg curls with leg weights. I have the leg weight wrapped around my ankle and I just bring my leg up. I have been doing 3 sets of 15.

Exercise 6: Dumbbell raise. Done with my 10 pound weight behind my head, I raise the weight from about the middle of my shoulder blades to above my head and down. I do 3 sets of 15. Supposedly to get rid of the dreaded "bat wings." You can feel the pain right in that area afterwards, so it must be working, right?

Exercise 7: Tricep pull down. I put the resistance band around the door knob and I pull down with the top of my arms facing the ceiling at all times. I do 3 sets of 15.

Exercise 8: Shoulder shrugs. You really feel this in the shoulders and the back. I hold the resistance band above my head and slightly towards the back and pull for 3 sets of 15.

Exercise 9: Dumbell curls. I use my forearm to lift the 10 pound weights up and down for 3 sets of 10. I have weak arms obviously.

Exercise 10: Dumbbell presses. Start with the weights at your shoulders and push up to the ceiling with the weights with straight arms. I do 3 sets of 10 each, but they really hurt.

Exercise 11: Lateral Pull Down. I wrap the resistance band around the door knob and facing the door, pull the resistance band outwards and to the back. I am doing 3 sets of 15 each.

Exercise 12: Push Ups. I cannot do a proper push up yet. So I am using the posture ball to do them until I can. I am presently doing 25.

Exercise 13: You can really feel this one in the back of your legs and your butt. You start in a crouch and you extend the leg with the leg weight to straight out behind you so its even with your back. I am doing 3 sets of 10.

Exercise 14: Lateral leg raises. Stand straight and lift the leg with the leg weight to the side for 3 sets of 10.

Exercise 15: Leg Squeeze. lying on your side, nestle the balance ball in the leg lying on the floor. The top leg sits straight on top of the balance ball. Squeeze the ball between your legs and hold each squeeze for 1 second. 3 sets of 15 each leg.

Exercise 16: Ball crunches. Balance the ball in the small of your back and do slow crunches towards the floor, using the ball to support your back. I am up to 25.

Exercise 17: Lunges with ball. Hook one leg over top the ball, using your abdominals for balance. Then use opposite leg to lunge. I am doing 15 per leg right now.

Exercise 18: Deep lunges 15 each leg.

Exercise 19: The plank. Hold it as long as you can. I am weak and only up to 30 seconds.

Exercise 20: Back extensions. With your abdominals on the ball, I do back extensions on the ball. I am doing 25.

Exercise 21: Oblique Twists. Like sit ups, but on the way up, you twist towards one side. I am doing 25 both sides.

Exercise 22: Tricep Dips. With your hands on a small bench, lift with your arms your body up and down. I am presently doing a modified tricep dip with my legs bent because I can't do a true one yet. I am doing 25 modified ones.

Exercise 23: Lateral Pulls. Pull the resistance band with your arms at the level of your waist. 3 sets of 15.

Exercise 24: Leg Curls 2: With the leg weight on, lift your leg, bending at the knee and keeping the thigh straight. I am doing 3 sets of 15 on each leg.

Scary incident . . .

2008-11-24T10:28:00.000-05:00

On Saturday morning (0430) I heard a pounding at the door. The dogs freaked out. I go to the door and see someone through the peephole. I did not open the door. I asked what the person wanted. A woman's voice. I want to use the phone. I said, I'm not opening the door, do you want me to call for help? No, I want you to open the door. I said, I am not opening the door. She pounds on the door harder and harder. I told her again, I am not opening the door. I'm going to call the police. She starts to talk to someone, down the walk around the corner of my house (or that is where her head was looking). She said, are you going to open the door, I am cold. I said I am calling the police. She said, open the door now! I call the police, and let them know what was going on. The police where there within seconds. It actually looked like they were up the street. The woman was gone. I started looking out the windows to see what was going on. I saw the police slowly driving up the street, with one of the patrolmen with a large flashlight, walking along the police car, searching in our driveways and bushes. They went up the opposite way. I then saw another police car drive back toward the way the first police car backwards very fast. I saw the lights and the cars stop. I was hoping that they found the person. I tried to go back to sleep.

I was almost asleep before the light cover in the kitchen fell down. Scared the crap out of me. I tried to go back to sleep again. I almost went back to sleep again, before I heard another pounding at the door. OMG I was scared. The dogs were flipping out again.

I look out the peephole and saw a police officer at the door. I open the door and he comes in to ask me my account of what happened that morning. I told him what I have put here. He wanted to know if I can write all of this out in a statement. Okay. He doesn't tell me what happened. He says it might cloud my statement and that he will tell me afterwards. He wants me to be as detailed as possible. Here I am in my dirty kitchen at 0700 in my pyjamas, with my three dogs jumping all over and shaking - writing out this statement. I can just imagine what the police officer was thinking.

Afterwards, he said the woman was claiming she was sexually assaulted. I said that was odd, that it appeared to me that someone else was with her hiding around the corner. I said I had no proof of that - she could have been talking to herself - but she never asked for help or sounded like she was asking for help. She sounded forceful and angry. I said her demeanor was scary and I am glad I didn't open the door and I am glad the police got there when they did - no matter what her situation was. He said they weren't sure of her story, that they were running down all the leads, and the neighbours gave similar stories - that she kept giving people different excuses to open the door and that someone else said they thought she was with a man who was hiding.

Scary situation. I thought I had put into the back of my head by last night, but I was in the backyard with Stella, waiting for her to go to the bathroom, and I heard a sound from the street. I felt a wave of fear and wanted to go in the house with Stella and lock the door.

Back to running - slowly . . .

2008-11-24T10:22:00.000-05:00

After a week of this anemia treatment, I was back to running. Slowly at first, I've been doing 4K every couple of days, with a great core/strengthening/resistance training in between to regain or discover some new muscles. I stepped it up to a 6k run last week and hope to do another one today. I find the core program really tough, but the results are palpable within a week. I feel stronger, my clothes have gotten bigger, and my body fat index has gone down 2% in a month, whereas it used to take a couple of months to go down that far. My waist has shrunk by 1.5 inches in a month alone. No real gains in weight loss though, maybe 2 pounds. It would be nice if the new leaness would translate into a weight number also, but I am satisfied that I am on the right track now. If I could only pick up the running more often now. I feel like I could probably pick that up this week now. The energy is slowly coming back.

Anemia sucks . . .

2008-11-12T13:12:00.000-05:00

So I got a call from my GP's office saying that I should come in a discuss some blood work abnormalities with him. I ignored the call, because I was busy. I then got a call last week saying that I should come in right away and discuss my blood work. I finally showed up the next day. I have been feeling very drained lately (since before Rattle Me Bones) and even that race I felt so drained that I ran it as a LSD, and still ran it quite slow (1:29 - granny-slow!).

So I knew one of the things they were going to find was anemia - I could feel it and I was quite symptomatic. I would get comments every morning when I came into work - "You look really pale today," "Are you sick? You don't look well," "A little anemic?" As soon as I started feeling the symptoms though, I was starting to pile up on the iron-rich foods, like chickpeas, kidney/black beans, tahini, etc - with citric foods like lemon juice, lime juice, etc. But I kept slowly spiralling down and just lost all energy by two weeks ago.

So, of course they found anemia. I knew my normal levels are anemic or borderline due to long-term anticonvulsant therapy but it was below that level. So I was put on Palafer and given a shot of Epo and to return in three weeks for follow up blood work. I was told to stop running for two weeks to let the therapy take effect.

I had slowed down my running to twice a week due to weekness, and only about 8-10K weekly. I stopped for a week. I don't think I could have run anyways. It took about 5 days to start feeling energy again, and by the 7th day, I went out running and felt great. I even did 1 hour of strength/core training today. I feel so much better.

How far the little candle throws its beams . . .

2008-10-30T18:25:00.000-04:00

I wanted to share this e-mail with everyone reading this blog. Please remember to light a candle on November 1st for little Nayohan. Christy is my friend and this is about her daughter and her family in Moosenee . . . Christy, I hope you don't mind . . .

Sent: Thursday, October 20, 2005 10:18 PM
Subject: Update on Nayohan Cheechoo

Dear Friends,

During this past week Nayohan has recieved her third dose of chemotherapy, she is now able to stand up on her own, and her confidence to walk is returning. Miyopin and I have returned to school and work in Moosonee and Moose Factory. Christy and Nayohan have remained in Toronto at SickKids. Thank you to everyone for rallying and sending positive energy and prayer, being supportive by listening, caring, visiting, giving, and extending your hearts during this overwhelmingly crazy month and a half.

The neurosurgical team at SickKids was able to remove 90% of an immature teratoma tumour in the suprasellar region of our little Nayos's brain. There is no chemotharapy protocol for the treating of the residual cancerous tumour in her hypothalamus-chiasmal region; the oncologist/nuerologists/nuerosurgeons "best educated guess" is a weekly therapy of vinblastine for 10 weeks. After which, we strongly hope the tumour will be gone, or has shrunk, or has stopped growing.

As a result of the physical trauma to her brain Nayohan has lost her innate sensation of thirst and has developed Diabetes Insipidis. Nayohan will be discharged from SickKids in the upcoming weeks, however after much consultation with medical personnel and the social counsellor we have decided that pursuing treatment in Northern Ontario presents its own risks to her health and therefore have opted for Christy and Nayohan to find a condo or apartment in the SickKids proximity in Toronto until Nayohan can return home as our healthy baby girl. We want our Nayohan to continue to recieve the best quality of care and treatment.

Miyopin and I will stay in Moosonee and we will reunite as a family in early December in Toronto when the MRI results are interpreted and to make decisions for the next stage of this journey. Please continue to send positive energy to our little polar bear cub Nayohan especially on November 1st her third birthday. We are truly amazed at the support network that has developed for our little Nayos and are extrememly appreciative and thankful.

Kitchi-Megtch and Thank you all

Don and Miyopin
Christy and Nayohan

Sent: Sunday, November 06, 2005 2:43 PM
Subject: Update November 5, 2005 Nayohan Cheechoo

Dear Friends,

The daily realities of the past two months (Nayohans separation from home, the intrusion of medical strangers, invasive procedures, distasteful medication, discomfort, and pain) have been dramatically reduced. Nayohan was discharged from the hospital last monday, walked that evening, celebrated her third birthday the following day. She now has a temporary sanctuary for her little psyche and soul.

Nayohan and Christy 'stroll' daily to the hospital for chemotherapy, blood-sodium level tests, physio-occupational therapy, and library storytime. Our little polar bear cub continues to amaze people with her resilient spirit, gentle presence, and co-participation and management of her healing and care. Nayos and Miyopin chit-chat on the telephone at bedtime - and I relay email messages and conversation to Christy. We await Nayos unconfirmed December MRI appointment.

We continue to live between the light of hope and the shadow of threat, and are so thankful and honoured for the supportive relationships that are helping to sustain and empower us through this difficult time. Please continue to send the positive energy to melt away the tumour and to heal our Saraphine Nayohan Cheechoo.

Christy can be reached at 416 xxx-xxxx - Unit 564 - 53 McCaul Street TO.

Kitchi Megwetch

Don & Miyopin
Christy & Nayohan

Sent: Saturday, December 10, 2005 9:36 AM
Subject: Good news from a relieved Auntie

Hello,

Following Nayohan Cheechoo's MRI, Don met with the doctors and the therapy is working - the tumour has stopped growing. Nayohan will continue the Vinblastine therapy at the Hospital for Sick Children.

Thank you,
Cassandra Nielsen
on behalf of Don, Christy, Miyopin, and Nayohan

Sent 2006/01/25 10:06

Subject Nayos

Good Morning,

Christy and Nayos arrived safely yesterday at 12:30 pm. You cannot imagine how amazing it was to wake up with the both of them home. Nayos is doing fine both spiritually and physically - she started touching familiar objects in our home, it seemed like she was ensuring this wasn't a dream. I recall a post-surgery meeting with Dr. Taylor inwhich he said "your in for the long haul" referring to her full recovery. At that time, I had no idea what he was referring to when he said that. As each month passes I realize his truth. Thank you again - we're just hoping we don't see SICKKIDS until the MRI.

Sincerely, Don Cheechoo

Sent: Wednesday, February 22, 2006 10:35 PM
Subject: Nayohan in Moosonee

Hello, Wachay, Bonjour,

Today, Nayohan received her first chemotherapy administered at Weenebayko Hospital, Moose Factory. Nayos and I returned from Toronto on February 14, our second attempt, to have treatment based here; our first attempt, January 24-30th was terminated due to a neutropenic fever and were medi-evacuated back to Toronto Sick Children's Hospital for two weeks.

Triumph - today was a success! Next goals: keep Nayohan healthy to receive her weekly treatments in Moose Factory and March 21st MRI in Toronto.

We are grateful for and trustful of our phenomenal health care team (Sick Kids, Weenebayko, Homecare, and the Clinic) that enables us, despite the fear of the unknown, to look towards Nayohan's future with optimism.

We are thankful to our ever evolving support network of family and friends and are fortunate that Nayohan and Miyopin are cared and enriched by so many people. I am proud that my daughters' characters have enhanced and developed friendships during our journey.

We are privileged to love our polar bear cubs and we acknowledge the daily miracle of our resilient family's continued existence. Some minutes of the day seem overwhelming and I am unable to feel anything but sorrow and anxiety. Being home, sharing love and fun with Don and my girls, and watching Nayohan's spirit heal has begun to re-energize my soul.

All of us have a common goal: treating, caring, and nurturing Nayohan to be the joyful little girl she is meant to be and the graciously beautiful and intelligent woman she will become. Thank you - Meegweetch - Merci and please keep sending the positive energy!

'Everybody loves Nayohan'

Christy, Don, Miyopin, Nayohan

p.s. I've attached 4 files: picture of the girls, letter from J.K.Rowling, and Nayo's bravery beads

Sent: Monday, April 03, 2006 9:26 AM
Subject: sunshine in Moosonee

Hello, Wachay, Bonjour, Saludos, Ni hoa,

Nayohan's journey from last summer in the sunshine cruising the Moose River and playing on the sand bars, to the frightening diagnosis of cancer and diabetes insipidus, to coping through hospitalization and starting treatment in Toronto, and continued healing in Moosonee, and onward to survival, growth, and rewarding life has been, is, and will be, fraught with numerous uncertainties.

However, Nayohan's progress over the past seven months is amazing and tremendous. The March 21st MRI showed a tumour that has neither grown nor shrunk and she will continue with the year-course of vinblastin chemotherapy based at home. We are more proficient at managing diabetes insipidus and the medical world, and most importantly, she is surviving and thriving in her own home with Miyopin, her parents, and her polar bears.

Love, knowledge, and action continue to be our most valuable tools to restore her heart, spirit, and health. We have rearranged some priorities, expectations, and schedules to accommodate our present challenge but our daughters' dreams and possibilities continue to be our long-term goals. Hope, the ultimate optimism, enables us to envision a cured, healthy, whole child, and a family returned to predictable normalcy.

We also hope for short-term achievable goals.

Daily, Nayohan understands that medicines, medical procedures, afternoon naps, good meals, and wearing slippers keep her 'blood strong' to receive treatment and to be an intact family unit in Moosonee.

Weekly, there is tremendous relief after each dose of vinblastin has been successfully administered and blood test results are acceptable for all. Currently, chemotherapy includes helicopter flights as the ice road to the hospital is too treacherous to traverse at this time of year!

Spring sunshine has arrived and soon we will cruise the Moose River: sand castles, kites, picnics, and fishing. Miyopin wants to learn to ride a bicycle without training wheels, play on a soccer team again, and return to swim lessons. She loves reading, science, drawing, and dancing, and was junior kindergarten student-of-the-month last February. She is a phenomenal caring big-sister. Nayohan counts to ten, sings her ABCs and rhymes, writes the letter 'N', dresses herself, and emulates and teases her sister. She is a resilient cutie-pie polar bear.

In three months time we will have reviewed the results of Nayohan's psychological assessment and endocrinological tests conducted when we were last at Sick Children's Hospital and be returning to Toronto for another MRI to ensure the effectiveness of the chemotherapy.

The initial shock of diagnosis has not passed and the anxiety of Nayos' compromised health is always present, but with the combined efforts of family and friends, medical professionals and technology, and Spirit we are coping and focusing on the present day and future possibilities. Please continue to send your encouraging and optimistic energy to our little polar bear, Saraphine Nayohan Karly, and to our family.

Kitchi Megwetch,
Nayohan and Miyopin
Don and Christy

Attached files: pictures of the girls and Nayohan's bravery beads.

Sent: Friday, May 12, 2006 6:20 PM
Subject: the girls

Both Miyopin and Nayohan have had colds. When Nayohan has a fever she has to have blood work done to see if her blood is "strong enough." Gratefully, her results have been great so you don't have to go to Toronto. Its been pretty stressful but we'll get through this. Last Wednesday she had her 30th dose of chemo. - 22 to go. Miyopin played her first soccer game of the season last night and she has a loose tooth. We will be heading to Toronto for Nayohan's June 1st MRI. Hope everyone is enjoying the Spring weather and birds,

Christy

Sent: Friday, May 19, 2006 9:16 AM
Subject: rainy day

Attached are photos of the girls this morning before Miyopin headed to school. Miyopin played soccer last evening - superstar. Chemotherapy was cancelled this past week - Nayohan's blood was too weak. The past two weeks have been a bit stressful due to colds and fevers but she is a strong little girl! We are planning to plant some lupin seeds this weekend and maybe go out in the boat if the weather/health are both stable. Plus, we have to post a letter to our cousins in Australia! And Aunti Caushie may come over to play playdough! Rainy day today.

Sent: Tuesday, May 23, 2006 10:15 AM
Subject: indulge me...

I love taking pictures of the girls and then sending the photos on...

It SNOWed all weekend, and once the long weekend is over, we now have beautiful weather!

Sent: Monday, May 29, 2006 7:31 PM
Subject: planes, trains, automobiles = TO's MRI

We all leave tomorrow morning for Toronto and June 1st MRI - Nayos and I are flying, Don and Miyopin are taking the train and driving the rest of the way. We are staying at the Delta Chelsea. Nayos and I return on Sunday - Don and Miyopin return on Monday. It will be a very busy few days! Please send extra positive energy on Thursday - we want the tumour GONE, but will also be elated if it continued not to grow. I will send un update once we return. Thank you all so much for being an extremely supportive network to Nayos and my family. Everything will work out and "everybody loves Nayos",

Christy

Sent: Monday, June 05, 2006 7:44 PM
Subject: Fw: planes, trains, automobiles = TO's MRI

Just a really quick note... with GREAT news.
This evening, our family is reuinted in our home. Thursday's MRI scan showed a stable tumour (it has not grown) and it may have even shrunk! Nayohan's diabetes insipidus has been stable during all the treatments/procedures/travelling.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence - Helen Keller

So, we are in "hiding" from OncologyWorld for another 10 to 12 weeks. Nayohan's 33rd administration of chemo is this Wednesday and I am hoping that we will have the i-stat monitor in our home by the end of the month.

Thank you for sending optimism our way. We are doing well and I hope everyone is enjoying the summer weather. I am planning to send an update email this weekend with all the details.

Christy

Sent: Thursday, June 15, 2006 11:07 AM
Subject: a first!

Miyopin's first permanent tooth has arrived and the tooth fairy came last night!

Sent: Monday, June 19, 2006 5:54 PM
Subject: invisibility cloak

You may not be able to notice... but Nayohan is wearing her invisibility cloak. While in Toronto, Nayohan would frequently be overwhelmed by strangers so she would put on the poncho Nancy Lucas gave her. And magically, no one could see her, ha ha ha!

Sent: Friday, June 23, 2006 11:01 AM
Subject: tiara and butterflies

Nayohan wears her tiara for the majority of the day; why not?
When we were in Toronto last March Miyopin saw the yellow dress in a store. Earlier this month when we were back at SickKids, she ran into the store and said "I've been dreaming of you, butterfly dress!" I had to buy it.

We are hoping for sunny warm weather this weekend so we can take Nayohan back to BearPaw Island and the sandbars to fly kites and play in the sand. She and I spent many moments, while she was healing away from home, reminiscing and planning our summer fun. Oh let there be sunshine!... and while I am begging for beautiful weather... Oh let there be no blackflies and mosquitoes!

Sent: Monday, June 26, 2006 3:38 PM
Subject: Harry Potter fans!

Another letter from JKRowling! Last April, I sent her a thank-you letter and enclosed pictures of the girls. We are thrilled!

Christy and the Girls

p.s. I've attached files of the original letter, too.

Sent: Thursday, August 24, 2006 7:37 PM
Subject: 1st & 43rd

first day of school
43rd chemotherapy

Sent: Monday, September 11, 2006 4:03 PM
Subject: Fw: sunshine in Moosonee

Here is a copy of the updates I send to our e-support-community. May I include you on our list? I believe that the more souls generating and sending positive energy, light, and prayers to Nayohan the more resilient and sheltered she will be by Spirit and the Great Mystery. Positive energy and polar bear power,

Christy

Sent: Saturday, September 30, 2006 3:21 PM
Subject: bin-nas-din nee-bish (falling golden leaves) in Toronto

Hello - Wachay,

Spring/Summer 2006 in Moosonee was wonderful and miraculous: witnessing the dramatic Spring break-up of the Moose River, nurturing a pumpkin patch and herb garden, hosting family and friends, building sand castles, and flying kites. When we were not enjoying the weather and wildlife Miyopin attended Science Camp and swim lessons while Nayohan continued her weekly chemotherapy, diabetes insipidus management, and healed.

We acknowledged the one-year of challenges our brave Nayohan surpassed with a Labour Day river-picnic, watching the birds before their migration south, and reviewing her thick medical chart. The water level was high enabling us to explore and reflected on the first autumn golden leaves, beautiful Miyopin started school, Don's summer holidays from work were over, and adorable Nayohan and I prepared for our September 21st Hospital for Sick Children appointment/MRI.

Unfortunately, this recent MRI showed the residual brain tumour to have progressed, aggressively; it has grown faster during the past three months than it had during Nayohan's first three years of life. More tests have revealed extensive spinal metastasis. These devastating results are a shocking and massive blow to our spirits: we have asked, received, and spent so much energy reinforcing the belief that the intracranial tumour would remain stable while on the vinblastin therapy as it had since October 2005. We were so confident that we would return home on September 24th. Plans have changed.

Don has taken a leave from work and each evening, at the hotel, Miyopin is embraced by the parent who is not at the hospital hugging Nayohan. We are a family in Toronto, confident that our polar bear cub is soothed by our adoring love and is receiving excellent medical care during the next few weeks. Nayohan is an amazing soul and together we have accomplished so much during the past year. Thank you. I can not explain the overwhelming emotions we are presently experiencing.

Please continue to send energy-love-prayers to our cherished daughters.

Christy and Don

Saraphine Nayohan Karly Cheechoo's Brave Journey with Cancer

November 1, 2002 -Born Weeneebayko General Hospital, Moose Factory, Ontario during the first winter storm of the season

September 3, 2005 - Medi-evacuated to Timmins; Admitted to SickKids after being diagnosed with a brain tumour & moderate hydrocephalus

September 4 - Right frontal endoscopy biopsy

September 12 - Surgical resection. Cancerous immature teratoma of the suprasellar region of the brain; Central diabetes insipidus with impaired thirst mechanism

September 30 - Insertion of central line & lumbar puncture

October 4 - First administration of chemotherapy

November 1 - Discharged as outpatient

December 9 - MRI: Residual tumour neither grew nor shrunk

December 27 - Admitted to SickKids with neutropenic fever

January 24, 2006 - Returned home to heal & continue to receive chemotherapy

January 30 - February 6 - Medi-evacuated to SickKids with neutropenic fever

February 22 - First administration of chemotherapy at Weeneebayko Health Ahtuskaywim

March 21 & June 1 - MRI: Residual tumour continues to neither grow nor shrink

August 5 - 40th chemotherapy

September 20 - 47th chemotherapy

September 21 - MRI: Residual tumour has progressed aggressively

September 26 - MRI: Extensive spinal metastasis

October 3 - First palliative radiation on back

October 4, 2006 - Nayohan's body passed away at 6am during a lightening storm

Fallen Angel

by Robbie Robertson and Martin Page

Are you out there Can you hear me Can you see me in the dark I don't believe it's all for nothing It's not just written in the sand Sometimes I thought you felt too much And you crossed into the shadowland And the river was overflowing And the sky was fiery red You gotta play the hand that's dealt ya That's what the old man always said Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one In my dream the pipes were playing In my dream I lost a friend Come down Gabriel and blow your horn 'Cause some day we will meet again Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light Fallin', fallin', fallin' down Fallin', fallin' down Fallin', fallin', fallin' down Fallin', fallin' down Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light If you're out there can you touch me Can you see me I don't know If you're out there can you reach me Lay a flower in the snow

Sent: Wednesday, October 04, 2006 9:44 PM
Subject: to weep is to make less the depth of grief

There is sobbing to autumn, and it is the weeping of loss: Nayohan passed away this morning. Don, Miyopin, and myself were with her during her body's last breaths. Until she lost consciousness this morning she knew and could tell all who loved her; she was a whole child - a happy child. Nayohan was born during a storm and that is why we named her the Cree for "the four winds". Nayohan passed during a lightening/thunderstorm.

We will start our meandering northern journey home with her ashes this weekend. The enormity of what has happened to our family is to hold it at a distance until we can begin to grasp its awful truth, little by little, piece by piece. We are a strong family with a large positive support group - thank you.

"One who has journeyed in a strange land cannot return unchanged." - C.S. Lewis

"He who lacks time to mourn, lacks time to mend." - William Shakespeare

Miyopin and I have started a blanket box for our little Nayohan that includes her favorite denim bush hat, her wabusk polar bear toy, her quilts and pillows, tiara, bracelets, bravery necklace, and her JK Rowling correspondences. I would appreciate anyone who has read of Nayohan's brave life to send a card/post card/note (tangible to Miyopin) symbolizing the international support network that encouraged her bravery, please:

Saraphine Nayohan Karly Cheechoo
Box 38
Moosonee, ON P0L 1Y0

During the next few days we are grieving at the Delta Chelsea in Toronto and then our trip with my cell phone (xxx)xxx-xxxx. Every evening, I always check our home answering machine at (xxx)xxx-xxxx.

Thank you for all you energy and spirit,

Miyopin and Nayohan, Don and Christy

Sent: Wednesday, October 11, 2006 9:44 PM
Subject: the presence of her absence is everywhere

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go."

My heart aches - we miss our Nayos so much. Yesterday, the community held a heart-felt memorial service which inlcuded hymns, prayers, sharing, a drum song, and concluded with a feast. Thank you to everyone who has cared and shared our grief.

The following is the eulogy Carman Tozer delivered and a poem John Cheechoo wrote. I have also attached photos of Nayohan's bravery beads and her footprint.

Poem by John Cheechoo

Nayohan

A strong wind came upon us all one early winterâ€™s day
Its sacred breath delivered a soul for all to cherish and love
That special wind lifted our spirits filled with joy and pride
A new beginning with the first soft blanket of white down

The warm breath of that wind carried news mile upon mile
It sang through the trees as it spread throughout the land
Its breath opened our doors and gently rushed into our hearts
Here it stays to care for our fallen leaves, troubles and dreams

Delivered by love, delivered by peace and all things good
We are blessed to receive such an angel to bring us to ease
In all our moments of inner turmoil we must never forget
The sacred wind breathes upon us love, goodwill, and hope

Forever We Love, Forever We Live

Eulogy

Saraphine Nayohan Karly Cheechoo
November 1st, 2002 - October 4, 2006

The clock of life is wound but once,
And no man has the power to tell
Just when the hands will stop
At a late or early hour.
Now is the only time you own:
Live, love, toil with a will,
Place no faith in tomorrow;
For the clock may then be still.

Welcome, it is with deep regret that I am addressing you today - we have all gathered here to pay our respects to a wonderful, brave and innocent young girl whose clock was stopped with her life barely having a chance to begin.

Saraphine Nayohan Karly Cheechoo, daughter of Don and Christy and little sister to Miyopin passed away on Wednesday, October 4th after a yearlong battle with cancer.

Nayohan was born on November 1, 2002 at Weeneebayko General Hospital, during the first winter storm of the season. She was named 'Four Winds'.
I would like to share a teaching from Uncle James and Aunt Daisy:

The Cree name given to Nayohan is important. Her name and spirit will always exist.

Chee-wha-din - North Wind is a powerful wind, geese like flying in this wind, a long time ago this was a good time to hunt.

Moo-shaw-hadin - East Wind, this wind blows from far inland and out into the deep waters of the bay. The land, animals are calm and the geese don't fly in this wind.

Sha-wyn-nhen - South Wind, geese fly good, wind helps them to glide and it brings Neebin - summer and everything begins to grow again.

Naga-bah-hen - West Wind, geese like flying and the tide is high and rolls in like waves in this wind. Naga-bah-hen-noo-datch - the West long time ago our people believed that this was the place of our ancestors and loved ones who have passed on.

Nayohan leaves a gift for each of you. One of the many gifts is her name.

Nayohan's life started at the end of the autumn season and her first three years were spent growing uniquely just like each individual leaf develops on a birch or aspen tree.

Nayohan grew up doing all of the things that young children love to do, things that we all take for granted:

She loved playing house and playing doctor.

She loved the outdoors, boating and sandy beaches in the warm summer sun. Skidooing and sliding in the chill of winter, warming up and having hot dogs by a campfire.

She loved spagetti and sauce 'gettis' she called them. The smell of good food cooking would have her rubbing her belly and saying 'mmm'. She learned to ask for seconds even before she could talk by pointing at her sister's plate of food.

She loved playing princess and wearing her tiara, attending balls with Miyopin and dancing in the living room. She would dance and turn like a leaf in the breeze - whirling in slow fluttering circles.

She loved 'knock - knock' jokes and soccer. Nayohan version of soccer was being carried instead of running after the ball herself - enjoying the bouncy ride instead.

She loved animals - Polar Bears, most of all.

She loved laughing and had one of the warmest smiles.

She especially loved her family - her big sister and role model, Miyopin, her Dad and her Mom.

In Autumn are the days of colour, where leaves take on beautiful hues of red, gold and orange - they charge the mind and spirit with colour and warmth against the coming white and cold. Each leaf seeming to say 'enjoy me while you can.'

Nayohan's brillant glow of courage and resilence have touched us all during her brave journey with cancer.

During the September 2005 holiday weekend Nayohan, with symptoms of hydrocephalus, was medi-evacuated from Weeneebayko General Hospital in Moose Factory to the Toronto Hospital for Sick Children, via Timmins General Hospital. A September 4th MRI confirmed a massive brain tumour which had grown throughout her three years of life. On September 12th, the phenomenal neurosurgical team was able to remove 90% of a golf-ball sized tumor from of Nayohan's brain.

As a result of the physical trauma to her brain Nayohan developed a very rare, permanent, and life-threatening condition of central diabetes insipidus. The day-to-day management of this condition was essential in maintaining her health.

A year-long regimen of chemotherapy was prescribed. On October 4, 2005 Nayohan received her first administration of chemotherapy. On November 1, she was discharged as outpatient from Sick Kids. Her first MRI was optimistic,on December 9th, the residual tumour neither grew nor shrunk.

On January 24, 2006. a very happy day, Nayohan returned home to heal & continue to receive chemotherapy.

She received her first administration of chemotherapy at Weeneebayko Health Ahtuskaywim on Febraury 22, 2006.

The subsequent chemotherapy treatments and mangement of the Diabetes Insipidus appeared to have all in control. The March 21st & June 1st MRIs show that the residual tumour continued to neither grow nor shrink.

Life for Nayohan was all about growth, healing and loving. Her little leaf during this time was held in suspension, not quite sure if it was time to change.

On September 21st, the shocking news that the MRI show that the residual tumour had progressed aggressively and follow up testing revealed extensive spinal metastasis.

Autumn comes without warning at a time when the lushness of life may seem to be beginning to wane, even though it seems there is endless time and the warmth of life must go on forever.

On October 3rd Nayohan had her frist palliative radiation on her back.

On October 4th, at 6 am Nayohan's body passed away during a lightening storm. By her side her family.

At the very top of a tree a magnificent crimson single leaf danced and turned in a sudden breeze, then separated from the branch. It whirled in slow fluttering circles down to be the little crimson flag on the solid green of a hillside. It has responded like other leaves, that, whatever the combination of circumstances, waning sunlight had hastened it's change. The brilliant leaf will turn to duff and soon will be part of the black humas underneath, lending its richness to the earth and colour for autumns of the future.

Nayohan may the wind take you home..

Love knows no limit to its endurance,
No end to its trust, no fading of its hope;
It can outlast anything.
Love still stands when all else has fallen

Sent: Wednesday, November 01, 2006 5:20 PM
Subject: how far the little candle throws its beams

Miyopin had a wonderful Halloween yesterday. She had two costumes (princess by day - bat by night) and returned from a chilly trick'or'treat-ing with a bagful of sugar. Yahoo!

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. Washington Irving

The heart ache of Nayohan's physical absence is like the infinite transforming sky; today's windstorm coincides with Nayohan's 4th birthday. We are lighting candles this evening symbolic of her presence in our hearts and to commemorate her courageous life-fire. Please dedicate a lit candle, too - many small flames together make for a greater brilliance. We are learning that bereavement is an individualized and slow process; we will weather the storms as a family by the illuminated memories of our little polar bear and by the warmth of everyone who has extended their hearts. Thank you.

I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death. Robert Fulghum

We are doing okay,

Christy

Sent: Wednesday, October 31, 2007 7:22 PM
Subject: Nayohan Cheechoo

We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly Cheechoo
in our hearts and to commemorate her courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for a greater brilliance.

November 1, 2002 - October 4, 2006

Sent: Thursday, November 01, 2007 8:45 AM
Subject: Amazing Moosonee

Wachay

I spoke to Bad Willie a week prior to his death - I said to him

" if there is no miracle for you - and you find that there's something on the other side - find my daughter and ensure that she is good - give me a sign on her birthday - she was born in a storm and her name represents the wind - I need to know."

He said that he understood and that he would.

We spoke to each other almost every week since he was diagnosed with cancer and throughout his ordeal with chemotherapy. He started to understand many of the emotions and behaviours that my family displayed during Nayohan's illness. He said he got courage and strength from Nayohan's own bravery, strength, and, in a surprising way, her wisdom.

The last time we spoke I think he knew it would be last, as he was sincere that he would make every effort to find Nayos and let me know that she was good.

Nayohan's birthday is today and there's a wind storm with blowing snow.

Coincidence or confirmation?

Sent: Monday, November 05, 2007 8:23 AM
Subject: Fw: Amazing Moosonee

I wanted to share with you this email Don sent this to his siblings this morning. His eldest brother died of cancer last month.

Wind warning for: Moosonee - Fort Albany
Issued at 5:09 AM EDT THURSDAY 1 NOVEMBER 2007
..STRONG WINDS THIS MORNING.

Sent: Thursday, October 30th, 2008.

Subject: how far the little candle throws its beams

Nayohan Cheechoo

We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly
in our hearts and to commemorate her
courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for
a greater brillance.

November 1, 2002 - October 4, 2006

My heart aches for our little Nayohan.

No energy, no mojo . . . .

2008-10-23T09:22:00.000-04:00

I've been feeling very tired this week and I don't know why. It feels like all the blood has been drained from my body. The only way I can get any energy is taking small naps, drinking large amounts of coffee, etc. I could stay in bed all day if I allowed myself. I had a seizure early Monday morning and I just haven't bounced back from it. I called in sick for the first four hours of my shift on Monday, but I made up for it by staying for 4 hours afterwards. Today, it was too much. I just decided to stay here all day and try and rest. I haven't been able to run since Sunday, but I'm going to try tonight if I get enough rest.

Nearly forgot about this little slap in the face . . .

2008-10-16T10:44:00.000-04:00

I got this letter from my neurosurgeon (actually, a form letter with just my name written in) just before Thanksgiving. It made me laugh and steam at the same time. I guess all I can do is laugh. If anyone doesn't want to go back and read the past year, I'll give a short summary:

I have a vagus nerve stimulator implanted in my chest to help lessen my epileptic seizures. The battery in my old one went dead last year and I needed this surgeon to replace the whole unit. I waited 5 whole months from when my neurologist told the surgeon about it, until it was done. It was an "urgent" surgery (ha ha ha). The surgery was even cancelled, with no apparent notice, the night before in October 2007. My seizures got significantly more frequent and serious as I waited for surgery. I ended up not being able to leave my house for 3 months due to seizure frequency. I finally had it done in December of 2007. The surgery ended up being botched in some way (ha ha ha), and the stimulator ripped through the bottom of the "pocket" in my chest, leading to the wires into my brain PULLING when I move my neck. It needed to be fixed to prevent either wire breakage (dangerous) or nerve damage (dangerous). I signed the consent in March 2008 (3 months after the initial surgery) and to this date, I am still waiting with not a WORD from the surgeon's office.

Did I also mention that when I saw the surgeon for the second time, that I should just "get used to it," and "not move my neck?" He also said that he had seen worse "disfigurements." I wasn't even worried about the "disfigurement." I was worried about the warnings my neurologist told me (he is the expert in this technology) about the vagus nerve being severed or damaged by the tension and the wire breaking and possibly cutting the carotid or jugular. That's what I was worried about. I wasn't even worried about the constant pain I have over the stimulator site as it moves loose in my chest, ripping scar tissue with movement, and the swelling. All I was worried about was the dangerous stuff. The surgeon didn't want to do the surgery initially, until I told him I trust my neurologist and I am going with HIS recommendation.

I ended up telling my neurologist on my last visit that I was getting a little frustrated with my life being on hold for a year and a half (the initial wait for the replacement and this wait for the repair). I said that maybe everyone just assumes that, as an epileptic, the surgeon must assume that I am not working and can afford to wait endlessly. I also made a polite phone call to the office (got the answering machine) stating that I would like some news on a potential date or timeline, as I have a career and would like to make future plans.

I ended up getting this letter after the inquiry through my neurologist and my personal inquiry:

(dated June 2008, but received in September 2008)

Dear Carrie (Carrie written in pen, the rest a form letter),

We are writing to let you know, that we fully understand your frustration and disappointment at the length of time you have been on our elective waiting list. In addition to the ongoing pain and discomfort that you are enduring, we realize that waiting for a surgery date also results in changing personal arrangements made with the workplace, home environment, relatives, etc.

We also hope that you will understand, that the specialty of Neurosurgery is one that deals with many life and limb threatening emergencies i.e. brain hemorrhages, tumours, strokes, aneurysms, etc. Our speciality is very unpredicatable, and obviously, patients with more serious illnesses, must get priority in the operating room. Also, our speciality has insufficient access to operating room time. This shortage has impacted all of the neurosurgeons practicing in Ontario.

Despite these problems, the elective waiting list for neurosurgery is considerably less than that for other specialities i.e. orthopaedics, where the wait for hip and knee replacements is over 12 months in most centres.

We continue to monitor our waiting list every week, and have not forgotten your case. We attempt to be fair in evaluating patient priorities, and you can be reassured, that we will contact you directly when a date is available. Thank you for your ongoing patience.

Yours very truly,

[surgeon]

[secretary]

I love how this letter makes it sound like I am getting a mole removed and I should just wait like a good little girl. I am very, very lucky my employer has kept me on, not doing direct patient care for over a year now.

Sooooo frustrating. I hope he doesn't decide to do this after January (when I start my 1/2 marathon training). That would really, really, suck.

Thanksgiving at the fam's farm . . .

2008-10-16T00:18:00.000-04:00

I had a very nice visit at my parent's house for Thanksgiving. I didn't get any running in, but got to go hiking/running/walking on the bush trails. I ate way too much (what everyone does during Thanksgiving) and enjoyed visiting everyone. All in all, it was a peaceful interlude outside of Ottawa. Tomorrow, I get back to the grind!

Week up to now . . .

2008-10-04T23:03:00.000-04:00

I've been having an up and down week. The beginning of the week started with alot of pain in the chest around the incision area and a growth of swelling around it. It was probably some adhesions and scar tissue ripping. It was really achy and the sharp pains came back, and now the pulling is back in full force on the wire up my neck. Makes me focus back on that!

My running has been going really well. I've been slowly increasing my distance and my pace has slowly increased. Hard work and consistency really pays off! On the down side, my right IT band along my right thigh down to my knee is aching. I have been doing some stretching and self massage, and hopefully it will loosen up. I've been reading how I screwed it up and am following the advice I am reading from running magazines and on www.runningmania.com.

The middle of the week, I had my first day of more than one seizure in a day in a long time. I had two seizures on Wednesday. Oh well, I can't expect everything to turn up. I will not let that get me down. My successes in running have negated that.

I hope to improve again next week. I only work Monday and Tuesday since I am taking a week off for Thanksgiving starting on Wednesday.

Race Report from Running Mania . . .

2008-09-27T10:13:00.000-04:00

Here is my race report from www.runningmania.com about my first race:

My first race of the Army Race 5K will be difficult to top. I was impressed with the pomp and ceremony, surrounded by soldiers - and the inspiring injured soldiers along the way. I was actually talking to a couple about their injuries near Pretoria Bridge (a nurse is always interested). I was in awe! I have lived in Ottawa for 10 years now, but it was the first time I actually saw a Mountie dressed up in the traditional uniform (and I live across the street from two Mounties), first time I saw those guards with the big, tall fur hats. The combat helicopters buzzed overhead just before the race start was cool too. I saw all the people looking out of the windows of the Lord Elgin Hotel. I bet they were thinking that they paid all that money for a room and they get "invaded." Oh, back to me. It was cold this morning! I had a hard time giving up my big brown Roots sweatshirt, in favour of my racing wear only. I found all the advice given to me by everyone here of great use. My previous goal for this race was 40:00, but I revised it when I decided last week I didn't need to do 10:1s anymore, and was going to straight run it with a new goal of 45:00. The race itself was very relaxing. I took my time, took it all in, talked with a few people along the way, just had fun. I saw a friend I work with and his wife on the QE Driveway and Elgin and he told me of his new position on my floor as I ran by. Great! I started speeding up past the 3K (or was it 4K?) mark when you could hear the finish line. I was so pumped. I got to pass my nemesis (this racewalker who was really clocking it) and my watch time and chip time were 45:39. The race was everything I thought it could be and so much more! The finish area was great. There was a line up of soldiers giving the runners their medal, and I just walked up to the hottest one to get mine (of course). I met up with another nurse I was chatting up with before the race. It was her first race too and she started running the same time as I did in May and started the LTR class at the same time. She did really well also, finishing about 5 minutes ahead of me. Both of us didn't get one of those post-race blankets, because we figured it was warm enough now. DUMB idea. Should have grabbed one of those blankies. I got cold waiting for my bag at the bag check. I was so happy to see my brown Roots sweatshirt! I got to meet Kiza, Nick, Crash, Strider, Mrs Strider! It was fun to watch the 1/2 marathon with them. I saw most of the Maniacs cross the finish line! Notes to self: My next race, I'm not going to underball myself so much by starting so far to the back. I spent the first half of the race passing families walking 4 to 5 abreast and were making you pass them wide. My fault though, they started at the back themselves to have a relaxing walk or jog. Racewalkers book it fast! Don't like them clocking me, but they were walking faster than I was running! I loved talking to people along the way though. There were alot of runners that this was their first race and they had just started running in the spring like me. All in all, goals met. Ran in the time I wanted with no walking breaks, absorbed the atmosphere, had a great deal of fun! My parents in North Bay were very proud and I have received tons of messages on Facebook. I will be going to bed early tonite though. I'm not used to waking up so early and I have to actually go to work tomorrow. I will be wearing my medal and my raceshirt under my lab coat though!!

Busy, busy week . . .

2008-09-26T23:41:00.000-04:00

It has been a busy (and tiring) week in the wonderful world of Carrieland. The Army Run was Sunday. I had a really bad migraine on Monday - not sure if it was caused by just being tired, stressed, dehydrated, change in weather, all of the above. Worked Tuesday, off Wednesday, worked Thursday and Friday. All 12 hour shifts. Just. Wiped. Out.

The up side is I have achieved my weekly milage goal so far to date. I have started a program to build up some more distance and endurance in my running and therefore to build a stronger base to hopefully, be able to build a 1/2 marathon program starting in January. I don't know where my upcoming surgery is going to fit into this. That is the wildcard, since I have no idea on the date. I tried to phone the neurosurgeon's office again this week to have some idea on a planned date, week, month, year? for this, but no one has called me back yet. I wish I could get some resolution so I can move on. Some days the pain over the stimulator is barely noticeable, but other days (like today) the pain just shoots in your chest like you've been shot. The stimulator was so swollen under my shirt today that you could obviously see it through my black t-shirt at work and it looked like I had a third tit. Attractive.

Not really going through this third surgery for the attractiveness factor. Far from it. The incision is going to be nasty and messy. I am totally aware of this and been told several times. I just want to not worry about snapping wires in my neck and not feeling this underlying throbbing and sharp pain all the time. Obviously with a fast turn-around and back on my feet in a week (I wish!).

Post Army Run . . .

2008-09-21T17:53:00.000-04:00

I did it! I did my first 5K race. There was alot of people and alot of pomp. It was really well put together. I ran the whole thing without stopping and followed my plan of starting out slow and gaining speed with each kilometer. I think I started back too far from the start line though, I had to pass alot of walkers walking 4 or 5 across, alot of walkers, strollers, etc. Next time, I think I'll start farther ahead in the back.

Got to meet alot of Maniacs these past couple of days and they all are so supportive and fun. I stayed and watched most of the 1/2 marathon afterwards, but got so tired, I just had to go home for a nap. I had got up so early this morning and the whole thing was so exciting. I had a 2 hour cat nap and am still quite wiped. I'm going to bed early and to work tomorrow!

At the start line . . .

2008-09-21T07:22:00.000-04:00

On this FRIGID morning, I am making my way to the start line of the Army Run 5K. I had a. REAL hard time giving up my big Roots sweatshirt hoodie today! I don't see anyone I know yet, but I'm sure I will soon!
Sent on the TELUS Mobility network with BlackBerry

4 days and counting until Army Run . . .

2008-09-18T00:00:00.000-04:00

I am really looking forward to the Army Run (www.armyrun.ca). I have decided, this being my first race, I am going to go and have a good time and not push myself. I'm just going to finish the 5K and take pictures along the way. My parents will love it!

I was at work today and this shift was indicative on how incredibly lucky I am to be me. I know reading this blog has shown that I have seen my share of unfortunate medical incidents, but I am basically a very content person and I live a relatively peaceful life here at home with a comfortable roof over my head, money to buy whatever I want, and surround myself with three dogs that love me totally unconditionally. My parents are very supportive and I have lots of friends. Some co-workers are not living such a peaceful life. Their personal life has actually changed their personality so much that they do not have a moment of peace and it is so persuasive that it invades the relationships she forms at work. How sad. I hope she finds peace from her personal situation soon and comes to a solution because she is such a special person.

I am also so incredibly lucky to have found Running Mania (www.runningmania.com) and found a great bunch of supportive friends that have given great advice and support on running and some other things. Running can be taken as a great motivator and metaphor for life and this new lifestyle for me has given me such great strength to deal with my health. I have had many people address this new life force I have been projecting even though my health this past year has not been quite the best. I feel I do have the strength now to wait for a long time for my upcoming surgery with alot of positive thoughts from what I have learnt from running.

I am planning on starting a 10K program after the Army Run and continue on that until the end of December, when I hope to start a half marathon plan (knock-on-wood). Right now, I am really enjoying my 8-9K runs the most and I think I will do well on this plan.

Disappointment in myself (the worse kind) . . .

2008-08-31T21:01:00.000-04:00

I have the long weekend off. I was supposed to run at least 5K on Saturday. I put it off because my legs ache from two 12-hour shifts on Thursday and Friday. I think I need new orthotics in my work shoes. So, I figured I could run Sunday and Monday - take advantage of the long weekend.

Sunday comes (today) and I don't run. I have no excuse. I'm not busy, overtly tired, hurt, aching, injuries, no seizures, no headache, weather is fine - no excuse. I am disappointed in myself. I thought I was better than that.

Really, if you get down to the core of the disappointment, I am afraid that once it happens once, it will keep happening until I stop running all together. I love running. I love the freedom it gives me. I love the feeling it gives me. I love the sense of accomplishment it gives me. I love the knowledge that I can do anything - after a life of not being able to do so much due to epilepsy. How can I give all that up?

Tomorrow is another day. I have to just chalk this couple of days up to rest days or "mental health days" and just go back to it. How can I not? I owe it to myself to keep going.

My long run Sunday and suffering for it Monday . . .

2008-08-25T18:23:00.001-04:00

I had an amazing run on Sunday. I did 9K! I couldn't believe how far I ran. The weather started out so nice. The temperature was nice, there was a nice breeze, very little humidity. I brought enough water (a 1/2 L water bottle and a 1/2 L of water with 1/4 Gatorade). I didn't start feeling uncomfortable until about halfway, when I started noticing it wasn't that nice, comfortable temperature anymore and the humidity became a little uncomfortable. The run along the river was also in the sun the whole way. My legs started cramping and stiffening up with about 2K left. I might have veered off and made it only a 7K run, but I stuck it in there and completed the run. The last 2K, I started doing 5:1's and then 2:1's the last 1K. When I got home, the temperature was 26 degrees with it feeling like 32 degrees with the humidity. I rested the rest of the day by playing with the dogs in the backyard.

Monday morning, about 2 am, I woke up feeling really jumpy and nauseous. I had a panic attack in which I think the focus of it was the upcoming 5K race. I think I was panicking about coming in last or whatever. Really, does anyone really realize what the focus of a bad dream/panic attack? I don't. Anyways, I stayed up for a little bit, playing a boring computer card game on a Palm until I felt really tired (5 minutes). When I woke up in the morning, I had a migraine and the nausea was worse. I took a Maxalt and let the dogs out, called in sick at work and went back to bed (after the dogs came back in). When I woke back up in 3 hours, the migraine was starting to leave, but the nausea was still hanging around. My legs were all wobbly. I have been trying to relax and rest all day.

Shortfalls and short falls . . .

2008-08-23T12:29:00.000-04:00

A brief note of the past week. The "shortfall" has been my runs this week. I have been running as planned this week, but there has been a small, but disappointing shortfall each day. My tempo run was lacklustre, having not timed one lap due to a mistake, then letting myself psychologically because of that first mistake. Then, my hill repeats were lacklustre also. It was hot, but not unbearably so, and I cut myself back by one hill repeat when I knew I had it in me to do it. I have been just genuinely tired this past week. Today, it is really hot and I can't let myself down again.

The other "short fall" was at the beginning of the week, on Monday, when I tripped over Stella outside on the brick patio and cut my nose, and really bruised up my knees. I now look like I've been in a fight. Luckily, my sunglasses cover the slightly black eye and cut on the bridge of the nose when they are on.

LSD and other non-drugs . . .

2008-08-18T10:12:00.000-04:00

My first LSD (long, slow distance) was yesterday. I did a 8K run around the perimeter of my neighbourhood. It went really well. I didn't start feeling it until I ran out of water with about 2K left. It was a hot day and very sunny yesterday and since I had not been on a LSD as of yet, I misjudged my water supply. I guess I either need a bigger water bottle or a double water bottle holder.

I felt so good afterwards. I had a lot of trepidation about signing up for that 10K run in October, but now I know I can do it. My pace throughout that 8K was not much slower than my 5K pace. I'm pretty sure I am better at long distances than shorter distances.

Stella's operation is tomorrow (getting fixed!) and I hope that goes well without any glitches. Peanut did really well and was running around in the afternoon after her surgery. Latte was really drugged up, she was allergic to the sutures, kept licking them and the wound partially opened up - which made healing slow. I hope Stella does better.