More than three years

We have been in the same tiny, "good enough" apartment for more than three years. When we first moved in October of 2011 the thought of month to month leasing appealed to us, and we figured even with the prime location, we'd be here three months tops... Just a quick move to save some money (ridiculously cheap rent), until we find something we liked better. With this short amount of time in mind, we didn't take much care in organizing. I did my usual- stuff it in a closet, boom, that's where it lives (not easy with wedding presents fresh from our July wedding), and Lucas didn't mind much at the time. We started out with my blue beach cruiser and his white fixed gear. The first things on the walls were our wedding photos. That was all we needed. It became our home. One bedroom with a combined living room/dining room/kitchen area was fine. We didn't have room for a Christmas tree (my only concern), but per usual Lucas surprised and delighted me with his craftiness by stringing lights, holly, and sentimental ornaments where he could to make it festive. It worked. It was perfect. Our place was small, but it was ours. The cheap rent was fantastic because it allowed us to save for a European vacation, a trip to Mexico, a trip to vancouver, on top of countless daycations and weekends along the coast. It was perfect... And then we started painting more, and riding more, and just doing more. All of a sudden our closet was stuffed with my coaching clothes, teaching clothes (yoga and kindergarten), various halloween costumes, half dozen sequined dresses, and about a million pairs of furry socks. And that was just my side... His side was also broken up by the various jobs he had- polos from the Sport's Center, his fair share of coaching shirts, snowboard clothes, office clothes, and cycling kits. Between the two of us- we still have more pairs of Van's and more spandex than is justifiable.

We have known a move was eminent. It was needed for us. We have outgrown this space. Where two bikes once lived in our living room, we now have 6. Oversized canvases lean against walls, spray paint cans spill out of a wine rack, and lord knows, my closet has now been taken over by this certain Canadian company that makes incredible stretchy clothes! Plus, we have aquired a three tiered carpeted tree, a litter box, and a carrier for our new furry companion, Bob.

It's time. We found a sweet spot that fulfilled both my needs- bathtub, place to have a beverage outside, and Lucas' needs as well- hard word floors, high ceilings. No laundry, no dishwasher, but space for us to create something new. Space for us to start a new chapter, and of course space for our bikes and Bob. Best of all, it is located in one of my favorite areas in Midtown- it faces our dearest friends, so we can look forward to even more game nights, family dinners, and play times outside. 

As much as I am tempted to dislike this ugly phase of paring down, giving away, packing up, I am enjoying the memories that are washing over me. I am reliving not just the holidays here, but the weeknight dinners, the million cups of coffee, the games played, the laughs had. Moving is work, but it's good work. It would be too easy to stay here, we're ready for change.  

This is our new back yard. Fitting that such a sweet and beautiful shot was taken over summer by our dear friend, Steph, who we'll get to share this space with.

Back to business

This week has been hectic, and relatively exhausting. Going from 6 days hooked up to machines and flat on my back, to back to 8 hour days on my feet in the store was not nearly as easy as I anticipated (turns out, I fancy myself quite the Super Woman-- super powers I have not). Regardless, today is Friday, and I can't not say it, I am in love. 

This morning I woke up early to catch a ride with Luke to the coffee shop. I hung out and tasted coffee while he opened. I had planned on just walking from his work to my work, but he called his pops to give me a lift. Work was good. Tiring, but good. I love my team. I love our store. I love that I get to help train our new people. I get to share with them the magic of our "work".

Post 4:00, the day went from good to great. I got to spend 115 minutes on my yoga mat surrounded by people I really care about (one of whom being my Handsome Mr..... Rocking his purple painted toenails.... Love that guy). There is truly nothing that makes me happier than looking left, looking right, looking in front of me, seeing people I appreciate and knowing we are together in the same space at the same time. 

After yoga we walked home, made dinner, I took a bath, and he sat on the toilet (lid closed!), and just chatted with me while we listened to the new mix tape he's been working on. Meanwhile, Bobcat has been cruising around our tiny place stirring up trouble, or attempting to. This is it. This is the good stuff. At this moment, tears are in my eyes as my thumbs furiously type this out because I am happy. I feel it. I am filled with happiness. I don't know how long it's gonna last, but I have to recognize it while it's here.

During a meeting this week, my boss was sharing about a speaker he heard at the #leadinluon conference. The speaker was talking all about happiness. Through all these studies they found that people who are constantly in search of the next thing, focused on getting to that next place, moving as fast as they can to get to that place, actually get to that place and find themselves unhappy, UN satisfied, restless, and disappointed. I get it. I've been that person; I am trying desperately to stop being that person. I have always had my eye on the prize, I have been focused on my goals, getting there, attaining whatever it that is... And then I find myself needing to search for something new, because- big shock- once I get there, once I get IT, I am not always happy. I am too busy worrying about what comes next.

 Well right now, instead of focusing on wanting to be living in Vancouver NOW, wanting to be working for Ben Jackson NOW, wanting to be on our next big adventure with Lucas and his coffee truck NOW, I am content to be on the ride. I am content to sit on the couch, sip a glass of red wine in my pajamas. Right now, at the moment, life is good. Who knows what tomorrow will bring, (there is a possibility- I will spend part of my day thinking, perhaps worrying about if what I am doing at that moment will get me to where I want to go... ) but for right now, I am right where I need to be, and extremely grateful for all those who are with me along the way. 

Grey on grey. Not at all hot, but so comfortable, and so right now.

Home.

We are home. My meds have been upped. Bob is being unruly and I love it. Thank you for the love, the support, the care. It is palpable for both Lucas and myself . goodnight!

Update.

For starters-

I cannot thank you all enough for the support, love and understanding through this really difficult time.

What is very very frustrating and challenging for me is that, they have been able to collect data that so far correlates with some abnormalities on MRI's (my left temporal lobe continues to have spikes of electricity and activity which is where the seizure activity is thought to stem from), but without them actually watching me have a grande mal seizure- tracking EXACTLY where in the temporal lobe the incidents occur, that data is only conclusive enough to warrant an increase in current medication, rather than finding an alternative treatment.

While I am told this is very common to not have a substantial event in hospital- our bodies are trained to fight off seizures, so even without meds a seizure cannot easily be artificially created- it's like our bodies go into super defense mode- shields up. Many people in my situation take a "holiday" which is a day off the 24hour watch to trick the body into thinking the shields can go back down, and then they continue again with the same monitoring, tracking, and stimulating for another 3-7 days. 

I can't do that. I just can't. It is extremely frustrating, draining, and also physically, mentally, even spiritually exhausting- not just on me, but it is taking its toll on everyone in my life. So I have opted to have tonight be my last night of inpatient monitoring. We will give it one last go with the sleep deprivation, and if there is no major event tonight, I will discharge tomorrow. 

Assuming nothing happens tonight, I will begin my higher dosage tomorrow and I will see two doctors this week to discuss the findings more in depth--- 5days with 24hours of film/brain waves apparently is quite a lot of information to pour through, so it takes some time.

So that's where we are. I wish I could more completely express just how much I appreciate all of the kindness and support that I have received. It is quite overwhelming actually to realize just how many people really care for me. I am one fortunate soul, I will never forget that.

Morgan

Picture updates

Love from my Nissen family.

Everything is better in new Jammie's. (Halloween to Christmas in less than a week- BOOM)

This guy just has my heart.

 

No news...

is frustrating news. With the sleep deprivation and stress tests, Dr. assures me that data is still being collected, just not enough for any answers yet. I wish I could give a more detailed update, but I just can't yet. I got nothing.

 I want to explain more, to give insight, to explain how I'm feeling, but right now it's this perfectly even combination of feeling everything and nothing all at once. It's almost as though the positivity I feel is completely balanced by the unfortunate negativity that is clinging to me so I am just blank. Just there balancing in between. I feel it all, but I am struggling to find the words to describe or sometimes even identify what it is that I am feeling. Much of it is frustration, yet much of it is still appreciation and gratitude (for my people, for the love- I feel it), but there is also still there is that annoying presence of my own irritability. Yes, I realize that's like using a double negative in a sentence. But it's true. I am annoyed by my own irritance. I annoy myself right now. I want to just hurry up, knock out a few good seizures and get back to my every day life. I miss Bob, I miss my bike, I miss the store, and lord knows I miss just hanging out with Lucas. Hanging out meaning not just stating at each other with sad or worried eyes, not counting down the hours and minutes until I can go to sleep, not having him have to walk me into the restroom and carry my cords every time I have to pee. 

See there I go getting all negative and down. I should be appreciating all that I have. This place is great. The staff is so kind, generous with their time, and genuine in their care. The bed is perfectly comfortable. It adjusts and has new clean sheets, tons of pillows, and I feel as though I am nestled in a little safe space. Which is good. I am grateful for it, I am. 

I just don't want to be in a padded bed. I don't want to have strangers coming in my room every half hour to check something, do something, fix something. I want to be able to pee on my own. I want to be able to take my own shower and not have to profusely thank the kind woman for wet wiping me down. I just want to wear an old grimey sweatshirt instead of this pristine, fully functioning and oh so appropriate hospital gown.

Ugh. This is my headspace. So much juxtaposition. This is my experience. Right now I have three beverages on a tray in front of me. I love beverages. I have water, champagne, and coffee. Three of my favorite beverages. They are within reaching distance, provided for my consumption. I want to be appreciative. I want to point out how fortunate I am. How much of a treat it is to have bubbles on a Wednesday morning before 10:00am. Next to that appreciation in my head, sits the awful awareness that the only reason why I am in bed on a Wednesday is because it is a hospital bed. The only reason why I am drinking champagne is because there's a good chance it's going to trigger a seizure. 

Fuck that. I mean I like champagne and all, but I just want this to be over already. I've got a sweet little life I need to get back to. 

And there's that emotional update I didn't think I had in me. So now ya know.

Pops and Momo

Pop hard at work on a crossword.

 Momo watching SnL with me.

Both are decked out in their purple. I am so grateful.

 

Be still my heart...

(Found this unpublished pos from October, and had to post it. Makes me smile, and I can use that right now.)

So much has happened lately. So much happy, so much excitement, so many hopes and dreams coming into fruition with hard work. But for now, I appreciate right now. 

My boys on a Saturday morning. Just looking, and smelling, and feeling the autumn air. Caught on camera just being. I am grateful. 

#dareto

Breathe. Smile. Trust. (sip coffee)

That's what I am doing right now.

I have been admitted into the hospital for a week of testing. "Testing" is what I am calling it. It's actually, called a video EEG. It's been planned about three months in advance, and I was quite tempted to cancel it. 

...I'm fine. I will be fine. I need to be at work. I probably don't even have epilepsy... That's what I was telling myself.

 False. I have learned that I am not "fine". lululemon will survive with my short absence, and as much as I have enjoyed denial, my very well respected neurologist insists that I do indeed have Epilepsy and it needs to be taken more seriously. With more recent seizures, and a growing fear of what those seizures might indicate, I am pretty happy I kept my appointment. 

What's happening now is that I have (what feels like) a million electrodes glued to my head, I have an iv stuck in my arm, a doo dad on my finger, and half dozen wires stuck around my torso. Oh, and I also have two cameras filming me with specialists watching the film on a live feed. Ugh. Just watching. Watching, and waiting, and hoping that I have a seizure sooner rather than later so they can  capture it all on various types of film, analyze it, compare it with my prior eeg's, my ekg's, my blood tests, mri's, etc and figure out why my meds aren't working. From there, they'll come up with a new solution, one that is effective and can even possibly grant me some freedoms- driving would be lovely. 

It could be worse, absolutely. I have a tv and wifi (neither of which we have at home), and I am allowed all the caffeine I can drink with possibilities of champagne in the days coming... If it means it might bring the seizures on sooner rather than later, I say pop the bubbly!

It could also be better, for sure. I wouldn't have a barrage of beeping everytime I unplug my heart thing to go pee. I wouldn't be sore from the digging needles, I wouldn't have to be on sleep deprivation, and I wouldn't be scared of what's gonna happen tomorrow when my meds are cut off. Am I going to feel it coming? Will I  have a huge chunk of my tongue bit off after? Is Lucas going to have to see me in my full convulsions? Are the doctors going to find the answers they're looking for? And the biggest question- do I want to know those answers?

All these thoughts are flying through my head right now. In addition, I feel incredibly, painfully vulnerable talking about it. It's uncomfortable. I don't know what to say. No one knows what to say. There is nothing to be said. I don't like sympathy and I refuse pity. I am strong. I am able. I am confident. (I keep telling myself). I dare to share this because it is my way of bringing awareness. November is epilepsy awareness month and if I can't share it now, when can I?

So I share. Little by little, I will keep the postings coming, and I will do what I can.

 I can breathe, smile, and trust. I will keep drinking my coffee. I will also keep kissing and loving this incredible partner that I have who is willing to cram into this bed next to me and be my partner through it all. More than the fear, the worry, the uncertainty, I feel gratitude. I trust.