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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.

isn't it amazing...

My dad is probably my biggest role model, in all aspects of his life. Tonight we were talking over dinner (Chinese! I've missed it these past two weeks) and as he told me stories about what he has been up to since I've moved back to school, he continually stressed God's wonderful timing in his life. "Isn't it amazing how God works!" was probably the most repeated phrase of the night. He told me about the different companies he is working for (consulting), while continuing his job hunt, and how it just so happened that as soon as my brother went back to school, my dad became increasingly busier. The significance of this is that my dad quit his job a few months ago, and his first day off was my brother's first day out of school. My dad got to spend the entire summer home with my brother, driving him to various events, mentoring him, and enjoying the time together. I suppose he was God's gift to my brother this summer, which he was happy to be. And now that my brother doesn't need him as much, suddenly things have picked up drastically for my dad.
He also told me that he got really really sick a couple weeks ago, with an extremely high fever and convulsions. He was actually at a friends' house and had to leave early. Just a few days earlier, however, my parents had big parties two days in a row, of about 50 people and 25 people. "Isn't it amazing how God works" he said, "that I was at someone else's house when I got sick, because it is much easier to leave someone's house than try and send 50 people home!" Also, the night he was sick, my brother was home alone with him, (he was scared to death, he just cried by my dad's bed til my mom came home), and they called my aunt who is a doctor and she quickly prescribed an antibiotic she thought may help, but she couldn't accurately diagnose anything without doing any actual tests (she lives 4 hours away). Anyways, it was 8:30 and the pharmacy closes at 9, so my dad again used the phrase to indicate how perfect it was that he could get antibiotics that night. The next day when my dad went to his family doctor, the doctor told him he was really lucky that my aunt prescribed that specific drug, because the virus he had was only sensitive to two types, and the one he had taken happened to be one of them! Not once did my dad complain about being sick - he only had praise for all the "good" things that happened!
There were many other stories of how wonderful God was working in his life, but in fact, some might easily see these things as tragedies rather than blessings. And while the stories he told me are so neat, it isn't the content of the stories that inspire me, but the attitude of my dad when he tells them. I could listen forever.
I can't help but praise...I am so blessed.
Isn't it amazing how God works, that after two absolutely emotionally and physically exhausting weeks my dad would happen to be in my area (three hours from his home) and take me out for dinner. What a surprise. Such a lucky girl.

a free slave

So today at work the Kaizen Group and I got our Daily Dale email (which hasn't been sent to us lately for some reason), and there was one quote that we just couldn't figure out.
"Responsibility is the price of freedom." Elbert Hubbard
Since the Daily Dale topic right now is Responsibility, I read this to mean, simply, if you want freedom, you must be responsible. However, one of my fellow co-ops thought it meant that to have freedom you must give up responsibility. We spent a good amount of time discussing our thoughts on this. I'm not sure what exactly Hubbard meant it to mean, and there's lots of articles which use similar quotes and ideas, which I believe lean towards the first interpretation, but I think you can make a valid argument for either.
One of the first questions asked during our discussion, however, was "Does freedom have a price?" I couldn't help but think about Paul's words in Romans 6:
"You have been set free from sin and have become slaves to righteousness."
This says that the mountains of sin I have committed, and the many more to come, they can be washed into the sea; when I become a slave to righteousness, they no longer cast a shawdow over me. All I have to do is become a slave to righteousness!
Unfortunately, righteousness is defined as free from guilt or sin (webster.com), and no one is sinless! (Ro. 3:23) But, praise be to God! By his grace he sent his Son to be the Sacrificial Lamb for the world's sins. Whoever clothes themselves with Christ will be sinless in God's sight! To a human mind, this is unbelieveable, illogical. But that is the magnitude of God's love.
So does freedom have a price? Yes, I think so. It costs more than we could ever pay. But Christ has paid the price for us, and now we are freely justified.

welcome to the city

Things have been busy around here. Canada Day weekend was great, I took two days off work, so I ended up with a 5 day weekend. It made for a nice relaxing time at home in Muskoka, which unfortunately had to end with me getting up early for a two hour drive to work Wednesday morning. But that's better than driving Tuesday night I think. It's a good thing I like my job, I'm not sure what state I might be in if I didn't! I spent Wednesday night watching my little cousin, Thursday night went for dinner and saw a movie with friends. Friday was spent with the same people at the mall and a movie. The next morning we went for Standard First Aid and CPR training (driving was crazy - lots of U-turns). Surprisingly, it was fairly interesting, but probably just because the instructor was good and I'm used to Stats lectures. Afterwards we went to the mall (more U-turns) and took the subway to Queen's Park where the African Music Festival was going on. It was nice to just relax in the shade and listen. We met up with another friend later on, and walked around Younge Street, which was closed for some sort of entertainment. I'm not really sure what it all was, but there was a guy dancing/juggling to Indian music, some guys making sand scupltures (so cool), huge giraffes bopping around, and a clown in a bed with a guy throwing sprinkles on him. Weird. I'm definitely not used to being in the city and it just fascinates me. Hong Kong, Paris, New York, and even Toronto - there's people everywhere, huge buildings, impatient drivers, lots of noise, and so many advertisements! I think I could just stand on a corner and stare for hours. What a different world.
U-turns seemed to be the theme of the day though, I can't even remember how many times we had to turn around. Isn't it awesome that in our own life journey, just like on the streets of Toronto, we can always turn around? It sure isn't easy, but neither is a U-turn on a busy street! When we finally recognize we've gone too far or turned the wrong way, when we take that step and decide we need to get back on track, God is waiting for us. Actually, He's more than just waiting for us - He's watching for us. That's pretty exciting if you ask me!
We also went to the 'World's Biggest Bookstore' and looked around. There are some pretty interesting books in the Religion/Spirituality/Christianity section. It's wild how many books are out there about the Bible (and other weird things, like 'The Gospel According to the Simpsons'). Sometimes I think as Christians we get caught up in Bible literature, rather than the Bible - the living Word of God. Fads come through like 'The Prayer of Jabez' or 'The Purpose Driven Life', for example, and people think that these books have changed their life.I don't have anything against these books. As the Church it is crucial that we work together, share our knowledge, experiences and wisdom, and it is awesome that we have books as a medium for that. In fact, I just finished reading 'The Case for Christ' by Lee Strobel, and it has some really great stuff. But I think we need to remember that God's Word is the only authority, and we should be digging ten times deeper into it than other books.
So as of today I was officially certified as first aid trained, that's pretty neat, hopefully I'll never have to use it...and if I do have to, hopefully I'll remember it!

fuzzy logic

Sometimes I have dreams where I can't see properly. Everything is fuzzy - a mess of unclear objects. I squint until my eyes hurt, but it doesn't actually help.
I was thinking about these dreams, and how frustrating it is (as frustrated as you can be when you're sleeping). It reminds me of how I feel when my life seems to be in a jumble, and I just don't know where I'm going. Up, down, right, left - circles bringing me back to the same place I started. I'd do anything for a pair of glasses - a clear view into the future - to the places I should be headed. In my dreams, I never find those glasses. But, in the waking hours, Christ has provided me with spiritual glasses. His Holy Spirit to counsel us in our struggles, and the Word of God, sharper than any double-edged sword, to teach and guide us to salvation.
With these tools I am provided with a "lamp to my feet and a light for my path." (Ps. 119:105) While God doesn't show me my whole life story, I am provided with just enough light to continue on my journey; in Him I am never left stranded in darkness or stumbling in a blur.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." - Prov. 3:5,6

is there any hope?

"These are they who have come out of the great tribulation; they have washed their robes and made them white in the blood of the Lamb. Therefore,
'they are before the throne of God
and serve him day and night in his temple;
and he who sits on the throne will spread his tent over them.
Never again will they hunger;
never again will they thirst.
The sun will not beat upon them,
nor any scorching heat.
For the Lamb at the center of the throne will be their shepherd;
he will lead them to springs of living water.
And God will wipe away every tear from their eyes.'" Rev. 7:14-17

If this is truly embedded in my heart, I can't help but be joyful; because of the hope that I have, I rejoice in knowing I'll be with my Savior one day. How sweet.

"When He shall come with trumpet sound,
O may I then in Him be found;
Dressed in His righteousness alone,
Faultless to stand before the throne." My Hope is Built on Nothing Less, Edward Mote

the beginning

day one: finding joy.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thess. 5:16-18
Can it be done? This is the journey God is taking me on this summer, and, no doubt, the rest of my life.

"Clap your hands all you nations; shout to God with cries of joy." Ps. 47:1