Indescribable joy

Life has been moving quickly for me this summer. Ben and I have been enjoying working full-time (together!) and not having to worry about homework! We have both been through long academic journeys and now it is time for a new chapter. Work has been fulfilling - knowing I am contributing to something and making an impact, even if I am only a small part of a bigger team and bigger company. I like being able to say "I designed that!" I just can't believe how blessed I have been to be in this position at a great company. And to have my bestest friend a few desks away blows my mind. We would have never guessed we would be at the same company. But here we are!
And that is not even the most wonderful part about life right now! Even better, a little life is forming inside of me, our little treasure. So many of my thoughts and emotions are centred around this precious life and we haven't even truly met! Unfortunately, the physical reminders of pregnancy are not always pleasant. I almost constantly have an upset stomach and dizziness and fainting has been a problem. I've also found my legs feel "heavier". But this is minor compared to what some women face. Here's hoping this will be the worst of it. I have no doubt all of this will be worth it though.
I'm in love.

Oh sigh.

Last week I had a fall. I was in the parking lot at work going to my car and I tripped. I don't even remember really how it all happened, just that I ended up on the ground. I had my cane in one hand, so I couldn't actually get that hand down to stop myself. So I hit my chin pretty bad. I was driving home for lunch anyway, so I picked myself (which took a while - I used my cane in one hand and my car door handle in the other) and got in the car. I had a toque in the front seat, so I grabbed it and used it to stop blood from dripping on me, and drove home! Ben was at home, and so he helped me clean up. I thought I was fine, but he was sure I should go to the clinic. It didn't actually hurt that bad, it was just I had a big hole in my chin. So, I felt bad for not going back to work right away, but we thought it was best to see a doctor. We went to the clinic and got checked out and they were going to put stitches in it but I asked for glue instead. I've never had stitches - and for some reason I really am scared of them. So I got glued up, got a tetanus shot, and went back to work!
This is my first big fall. I've tripped before but just got a scrape on my knee. I'm scared about where things are going. I really can't be falling like this...but I really don't think I'm at the point where I should be using a walker. I do have an appointment on Monday with a doctor who will assess my ability and try to determine what the best assisstive devices are. I'm really looking forward to her advice.
So, life goes on! My chin still isn't really healed, but it is much better. And this week Ben started work at the same place I do and it has been amazing. I never get tired of spending time with him. He is such a support. And we get to plays games at lunch!
God has been good to me.

Training Wheels

Recently I've had the urge to ride my bike. It must be spring. I think it would be a great activity for me to get out and enjoy the sunshine. Problem is, I haven't ridden a bike in a long time. So, turns out, it's not really so hard. There are a couple problems though. First, I can't start - I can't pull my legs up on to the pedals (without using my arms). So what I do is I pull one leg up onto a pedal, and then I'm stuck. Normally I would just push off with that one foot and then away you go, just put the other leg on the other pedal. But it's not so easy! So, I need something to stabilize the bike while I use my arms to position my legs on the pedals, and then I can get going. My husband is pretty good at stabilizing the bike for me...but that's not very practical! So, I bought 'adult training wheels'. Yep, I have training wheels on my bike. I have to admit, it is pretty embarrassing. But, worth it I hope. I lean my bike onto one of the training wheels and then I can get my legs ready and push off. So, training wheels, good. BUT, they are super annoying when I am trying to ride and I lean a little bit to either direction. The training wheels hit the ground and then it's all bumpy (riding on gravel) and it makes it harder to steer. So, I am hoping that we can bring the wheels up even higher. That way they will be less likely to hit the ground when riding. It does mean that the bike will be on a big angle when I'm trying to get on. Also, I definitely need a new seat. I guess I can't 'lift' myself off the seat properly while riding and all of my weight goes right on the seat. Not comfortable! So I think a 'comfort' seat might help make it a bit more enjoyable. Regardless, I am so excited to get out there and go for bike rides with my family! And hopefully not too many 7-year-old kids will ride by and make fun of my training wheels.

Enjoy today!

Nothing that is broken cannot be made new

He sees you down by the water line
Knows what you're thinking all the time
He sees the rising of the waves
When the tide starts rolling in
He lets you know it's gonna be okay

He sees you dancing in the moonlight
His arms around you hold ya tight
And if those clouds should start to break
He'll be standing out in the rain with you
And though it's hard to believe
He believes in you

God is watching over you
As always
You are loved
Whatever you go through
He's right beside you
God is watching over you
As always
And if you think He'll ever leave you
You better think again

Painted in the sky a rainbow to remind you
Nothing that is broken
Cannot be made new 
He knows when ya feel so far away
He's gonna keep the night light on
He's waiting there to receive you

You are loved
Wherever you go

Through fire, through wind and through rain
Yesterday, today and tomorrow the same
Nothing here can take this love
Nothing you could do will break this love
Climb a tree, gonna reach so high
Swing low sweet chariot
It's time to fly
He sees you down by the water line

Phil Joel - God is Watching Over You

Work...

is awesome. I get outside every day (something I didn't do when I worked from home), spend time with great team members, and get to really use my brain. I am doing stuff that I find fascinating - and I get to do it in a very accessible building. I can't believe it's already been two weeks since I started, the days are flying by!

One big thing that I have overcome is accepting a cane. I brought my cane to my first day of work. I had never used it before, but I bought a while ago so that when the time came that I needed it, I would have it available. I got the official tour and decided I should take my cane. It was a little weird at first, but I was so glad I had it with me. It is a big building to walk around, and my legs were extra shaky with first-day-of-work-nerves. And now people just know that I have a mobility problem and use a cane. I don't have to explain myself, or try to walk as normal as possible, or be afraid of walking somewhere because it is a bad day and I don't want to trip. Now I am trying to figure out a balance, when to use my cane, and when not to. I want to do my best to walk without it when I can, because I don't want to start relying on the cane. But I also don't want to fall at work. I have found, though, that since starting work my legs have been so much better. I think a big part of it is that I am using them more. When I was working from home it was so easy to just sit on my butt all day and just walk the few meters from the living room to the kitchen. I feel like I have renewed energy and strength. I also most certainly have a renewed sense of confidence. I am so blessed to be able to work!

AND - as if things couldn't get any better, Ben had an interview where I work! We haven't got an offer letter yet, but we have been told it is coming. We won't be on the same team, but our desks will be really close to each other. We can have lunch together and take Wii breaks (the company has a games room). How perfect is this?

We've been asking a lot of questions since we found out there was something wrong with me. Mostly WHY? But recently God has really been holding things together for us. I feel like I haven't been this happy in a long time (not that I've been particularly sad, but living with a disability can really be a constant downer). So I still would love to have working legs, but I know that God is blessing us in so many other ways.

New Job

I am both looking forward to and dreading the coming of Monday. Starting Monday, my life will be very different than it ever has - I start my first full-time, no end in sight job. The job is absolutely perfect for me - it is close to home, the people seem very nice, the work is just what I was looking for, and my disability should be a minor factor in my ability to perform well. I will be a Senior User Interface Engineer, and a large portion of my time will be at the computer and in meetings - there are low physical requirements. I am really looking forward to contributing to something and being part of a team. But I'm still scared. I have been in the building for interviews, and it is very accessible - there aren't even any stairs! But there will be still be lots of walking to do and many new people to meet. What will they think of me? Should I bring a cane? If people ask me why I walk the way I do, what should I say? Sometimes I think using a cane would be a bit liberating because it signals to people that yes, I do have a disability, rather than having them wonder what is up with my walking. It is hard not to worry about this stuff.

Another thing that I am thankful for, though, is that I shared with the interviewers (who I will be working closely with) my disability and what difficulties it presents. It is really comforting to know that they already know - I don't have to worry about how to tell them now, and I don't have to feel like I was hiding something from them when they decided to hire me.

Regardless of my fears of Monday, I just count myself so blessed to be given this opportunity. While my legs don't work so great, God has given me a pretty good brain. And what I am good at and what I like to do is mostly on the computer, so having not so great legs isn't a big deal. Earlier in university I focused more on manufacturing engineering, but certain things happened that steered me away from that after graduation. At the time, I wasn't happy about not going in that direction. But now, I see it as such a blessing! While I am sure I would have done what I needed to do to get my work done, it would be difficult to be a manufacturing engineer with a poor walking ability. God certainly knows what is best for us way before we do. And while I see that over and over again in my life, I still find it difficult to take that perspective when new troubles arise.

This weekend...

This weekend the weather was so lovely. I think spring must be just around the corner. And if it isn't, I am very thankful for the brief showing it has given us recently. I am finding winter to be difficult for me because my spasticity increases when I am cold. A person without HSP might shake and shiver a little when they are cold, but my legs become very stiff, shaky and unstable. The warmth of spring brings more relaxed muscles. Another reason why I am not so much a fan of winter is because I seem to be bound inside. There isn't much to do outside in the winter if you don't plan to be moving. I used to enjoy playing in the snow, going for brisk walks, and snowboarding in the winter. Just staying on my feet in the winter is enough activity for me! I have to be very careful of my footing and often there is snow and ice all over walkways. It is something I would have never really paid attention to - some snow on the walkway, but it can pose real challenges when your feet don't get very high off of the ground. So, with spring weather here, I can finally get outside. I might not be going for a run or playing soccer, but I can enjoy the weather by taking (very) short walks, tossing a frisbee, and just relaxing outside in the sun.

We also had some yummy treats to match the spring weather. I made a variation of Kraft's Peanut Butter and Chocolate Ribbon Dessert. It is a favourite around here. I usually make it in little ramekins so we can easily grab a portion size for a snack. It is so cool and smooth - it melts in your mouth. Our other treat was we opened a bottle of icewine that we bought on our honeymoon (almost 2 years ago). mmmmm. It was a sweet nectar. Here's to spring!

Margaret Bag

This weekend I made a lovely sling bag for my sister-in-law. The pattern came from Oh, Fransson! The look is very similar to the one I made a couple weekends ago, as I used the same brown linen fabric for the outside, and a more colourful print for the lining. I also appliqued on a flower from the lining fabric onto the outside.

It is a very pretty style, but it is quite large. If I was to make it again I might make it a bit smaller. After making these two bags recently, I have so many ideas running through my head for other possibilities! I just need someone else to make something for! Well, and having my own sewing machine would also help. Right now I am using my mom's. So, I can really only get things done on the weekend when we visit. I have a small apartment, so I am looking into a half size sewing machine that I can hide away when I'm not using it. For now, I'm content to get my sewing fixes on the weekend, until my mom has enough of me taking over her sewing room!

Support groups

So, while we don't have any concrete proof that hereditary spastic paraplegia (HSP) is what I have, the neurologist I went to most recently said it is the most likely thing at this point. There isn't really a ton info out there right now, but I did find this website that has a lot of good information: http://www.sp-foundation.org/

There is also a "Support Group" (via email) that you can sign up to. There is a fair bit of activity on it, so choose the daily email if you don't want to clog up your inbox with every message or you can just read the messages online. It is a great place to ask questions, someone is bound to have experience or an opinion.

With Glowing Hearts

The Olympics are over. I can't even really believe it yet. These past few weeks have been so amazing, so heart warming; it is hard to describe. I have always loved the Olympics - our TV stays permanently on during each one. But these were different - they were in Canada. It has been such an awesome opportunity to feel so connected, so one with the other 33 million Canadians who span this enormous country.

So, since February 12, our TV has stayed on almost constantly. I saw 25 of the 26 medals we won live (sorry, 4-man bobsleigh, I was watching men's curling), and many, many other great performances by our fabulous athletes. The other night after watching several gold medal performances I said to my husband that my heart felt 'warm'. The success of our little country in these games and the connection of the people across it has really made an impact on me. I haven't been able to keep dry eyes as I have experienced the stories of these games (like Joannie Rochette).

For a recap of the games: Stephen Brunt Olympic Montage

Feeling crafty

Lately all I want to do it make things. I can't stop looking at fabric online. I don't know what has gotten into me. Maybe I've been unemployed for too long. So, this weekend I whipped together a tote bag for my friend J's birthday. My goal for the year is to make most of my gifts. Not really because it is more economical, and it is definitely not easier that just buying something off the shelf, but I think the personal touch is so special.

I love how simple it is, yet still has a punch of fun. The exterior is a simple brown linen, and the lining is fabric a friend brought me from Japan recently. I looked online for free tote bag patterns/tutorials, but didn't really see any that I liked. They weren't box-y enough. Instead, I used a bag I already have as a rough guide.

Ringed

Recently I was a temporary warden in the Ritual of the Calling of an Engineer and had the privilege of 'ringing' my husband! This is the Iron Ring Ceremony where Canadian engineers acknowledge and commit to the moral, ethical, and professional obligation to humanity in their work. They receive an 'iron ring' as a symbol of this obligation. It takes place in an engineer's last term of school and most students are more excited to get their ring than their degree. It is a private ceremony and only obligated engineers and the candidates are allowed to be present. Close friends and family who have been obligated can come to the ceremony as 'temporary wardens' to place the ring on the little finger of the candidate, in place of the Camp wardens. So, that was me. Most temporary wardens are friends, fathers, or grandfathers, so I felt especially special to be the only wife giving her husband a ring in our ceremony!

Coverings

This weekend I tackled two projects I've been meaning to do for quite a while. First, I recovered our cube. Before the makeover it was bright yellow with a fuzzy texture. Super fun, but didn't really fit with our room.

I wanted the cube to have continuous pattern around the sides of the cube, so I only cut out two pieces - one for the top and one long panel to cover all four sides. Then I pinned them together and went to work sewing. The corners were a little tricky because I used just one panel for the sides, but they turned out fine, especially considering I haven't touched a sewing machine for years! I considered making it removable, but I wasn't in the mood for velcro or elastics at the time - stapling the bottom seemed like a much easier solution.

I had also picked up a bulletin board to recover with the same material. I wasn't sure how to deal with the frame. I considered recovering just the board and have the original frame showing, breaking off the frame and having smooth edges, or covering the board and the frame.

I went with the last option. It was the easiest, and I think it gives it a unique look. All I used was hot glue to attach the fabric, and I tried to get nice definition around the inside of the frame. Voila!

Results

On Monday I had the chance to visit another neurologist. What I was hoping to get out of the appointment was advice on how to increase my function and improve day-to-day activities. I was so fortunate to actually have this happen. I left the appointment with a huge sense of optimism. My other neurologist is fabulous - she has done such a thorough job of testing all the possibilities. So, he essentially said he trusted her and agreed that what I have could be several things, but likely they would classify it under hereditary spastic paraplegia for now. Also, apparently he is now testing for new HSP gene mutations. I have previously been tested against the older mutations, but he took blood to test for the new ones. He then went on to discuss ways of dealing with this 'pain in the arse,' as he called it.

First, he prescribed exercise. I try to exercise, but it is super difficult when I can't do most 'regular' exercises and I tire very quickly. But, this time, I am determined. My goal is to exercise 6 mornings a week, doing resistance exercises, doing upper and lower body on alternate days. On the upper body days (which is MUCH easier) I will throw in some elliptical too. Over a year ago a physiotherapist recommended an elliptical for me to get some cardio exercise. So, we got one. Unfortunately, this neurologist said a recumbent bike would be better for me, because I don't have to hold myself up and I can just work on my legs. At this point, we don't have room for another piece of exercise equipment in our 500 sq ft apartment, and I would feel bad buying a bike and just storing the elliptical in my parents basement. So, I think I will try to stick it out with the elliptical for a while and see if I can manage it for longer periods of time.

Next, he suggested I try a "cocktail" that he said based on his research should help protect my spinal cord from more damage. It consists of Coenzyme Q10, Creatine monohydrate, and Alpha Lipoic acid. So, over a lifetime, taking these things twice a day is going to get mighty costly, but at this point I am happy to do anything that will help.

Finally, he suggested I increase my Baclofen dose. Right now I take 5 mg in the morning and 10 at night. He is working me up to 10/10/10 to see if it has any effect. Right now I don't find that the current dose is doing anything. I do hope that I am able to stay alert enough though with the higher dose.

All in all it was so positive. He wants to continue to monitor me, so I have another appointment in 6 months. This is so excellent, because my other neurologist saw me two years apart. I am excited that he feel s that it is worth seeing me more often and helping me stay on top of my problems. I am anxious to see how I do in these next 6 months. He had a machine test my strength, and next time I see him we can very quantitatively look at how my strength has changed. I'm so thankful for the opportunity I had to see yet another neurologist. I'm very fortunate to have wonderful people helping me get referrals to great neurologists, and to have a public health system that means I don't have to worry about the cost.

Hope

Tomorrow I have an appointment with another neurologist. This will be the fourth neurologist I've seen. While it is not exactly the way I want to spend my afternoon, I have a sense of excitement for what could come of it. So far I have been told that there isn't much that I can do to improve my situation. I should just wait for things to get worse (and they are). There must be something. I feel like I need a whole solution - someone that can tell me that even though my spinal cord will not necessarily heal, there are things that I can do to improve my independence and mobility - exercises, medications, assistive aids. Maybe this doctor will take that approach. In fact, this doctor may even be able to provide a more accurate diagnosis. Why not be optimistic? So, I have hope for tomorrow.

Job interviews

Currently, I am doing consulting work in business analysis. It means I have a lot of flexibility (which I love). However, it isn't exactly what I want to be doing 10 years from now. So, I have been casually applying to positions in the area. However, the fact that I might get an interview scares me immensely. Not so much because of the interview questions, but getting around a new place with a disability. Will I be able to navigate the building? Will there be stairs? I recently had two interviews, and both ended up okay. The interview room was very close to the front entrance so I did not have to walk very far, which is usually the case for interviews. But it is not guaranteed. Sometimes it is frustrating to think about being up against other candidates who don't have walking to worry about in addition to the actual interview. I also wonder when the best time to disclose my disability is. Should I tell HR before the interview? Then I can request that the room be close to the front entrance. I'm afraid that creates hesitation before they have even met me. Should I mention it in the interview? This seems the most natural to me. I don't want them to get someone they are not expecting - I want the company to be okay with hiring someone who won't be able to run around the office, but has the brains, skills, and personality to make up for it. It does mean that, even though they probably won't admit it, they will take my disability into account when making the hiring decision. Or, should I wait until later, maybe after the offer or even after I have been hired? This is hard for me because I feel like I haven't been honest, like I was hiding a part of me from my future employer. It doesn't seem like the right way to start off a relationship. But apparently I should never have to disclose my disability to my employer, but honestly, even though I can hide it pretty well in short walks on a good day, they are going to notice something is wrong. And then it is just awkward.

momentary troubles

I started this blog a few years ago just for fun. I was just looking for a place to write down my thoughts. From the drought of posts it is obvious it didn't stick. I am hoping to try at it again.

Since then, my life has taken many turns. I would have never guessed I would be where I am now. Looking back to when I started this blog I have many amazing memories, but the easiest thing for me to remember is how I felt. Happy. I remember constantly laughing (and rarely, if ever, crying). Life was great. I was succeeding in my studies, I held leadership positions, my family was full of love, and I had an amazing group of friends. I didn't have any specific reason for naming this blog 'Momentary Troubles' except that I really believed that no matter what was thrown at me in life, it would all be wiped away one day. However, at that time, my momentary troubles really were just momentary. I was worried about whether I would pass 'Systems and Signals' or find a co-op job. It is easier to have faith that you will get through anything when your problems are resolved on a four month basis. I had no idea what troubles were yet to come.

Now, four and a half years later, my troubles have gotten bigger and aren't resolved so quickly. Around August 2006 we began noticing that I was having difficulty walking. I began seeing doctors, physiotherapists, and neurologists, and had an enormous amount of tests. The MRIs showed "a relatively small cervical spinal cord in all 8 segments. The atrophy becomes even greater at the lower cervical cord, approximately C6 all the way through the thoracic cord." I had significant spinal cord damage. At the beginning, no one seemed to have any idea what was going on, and just told me that I probably had some injury at birth and should go on with my life. Eventually I found a great neurologist who did further testing. However, genetic tests indicate that I do not have the common mutations seen in hereditary spastic paraplegia, there is no inflammation from a virus, and regular MS is unlikely because I do not have any lesions. But it doesn't mean these aren't possible, I just don't have any concrete answers.

Since this discovery, the always-laughing-never-crying person changed. I cried. A lot. My troubles moved from worrying about succeeding in school to wondering if I would be alive in 5 years. But at the time in my life where things seemed to be falling apart, I was provided with an amazing strength to get me through: my best friend and now husband. He has stayed beside me every moment and been the only thing that has held me together. I still have my moments where I am utterly frustrated. I still break down and cry. It is hard to be satisfied that one day I will be whole and new again, when I so badly want to be healed now. But whenever this happens the most wonderful person in the world helps me find hope in what is to come.

While God has taken some of my health away, He has been so gracious and in its place given me so much more. I would have never imagined being so full of joy. It is amazing to think that before all of this happened, when troubles were few, 2 Corinthians 4:17 was the verse that inspired this blog. I believe I was being prepared for things to come. It is not until now that I realize this blog was given just the right theme.