august 16. 54 days post liberation

well i guess it’s time to write another update here as to how i’m doing on the MS front now that i’ve had the procedure done. it’s strange to think that it’s been almost 8 weeks since i had it done in that hospital in san jose costa rica. on one level it seems impossible that so much time has passed but on another level it feels like it happened another lifetime ago.

some good news, hot off the press, is that i will be getting re-tested on aug. 25 in barrie for ccsvi. the reason why this is good is that i’ve been wondering if my right jugular vein that was opened during the angioplasty i received is still open or if it has re-stenosed. the clinic in barrie that did the original test, under the strong and heroic leadership of dr. sandy macdonald, has put out a call to people who have been tested there and have gone abroad for the procedure, to come back in to be re-tested to see if there have been any significant changes. i am so thrilled about this as it will give me information that i am desperate for as to if the procedure has remained successful. (as an aside, if you’re donating to MS this year, i’d ask that you give to doctors like this for their research and not give to the MS society as they clearly are not listening to the pleas of those of us who live with MS.)

as for how i’m doing, well i’m doing quite well over all. i’ll admit that there have been a few discouraging weeks where i have had difficulty not focusing on the things that i didn’t get from the procedure that i desperately wanted. my hands and feet are still as numb as ever and for whatever reason, even though i had long come to grips with the assumption that i’d never get the feeling back in those areas, i found myself deeply lamenting that this did not change for me. i also struggle to walk very far or stand up for very long. i’ve finally figured out how to articulate what happens to me when i walk or stand for long. i feel like i’m getting heavier. i stand or walk and within 10 or 15 minutes i feel like i’m 400 pounds and that the earth’s gravity is sucking me into it like it’s a magnet and i’m a huge chunk of metal until i have no choice but to sit down.

but thankfully despite those things, the discouraged period seems to have passed for me.

i do think that some subtle improvements have happened on the bladder front. i used to have to get up every night like clockwork at 2am, 4am and 6am to pee. i seem to have eliminated the 4am visit. that’s pretty huge for me. now i’m not out of the woods on this front of course, and the 2 visits i made to dumpsters today while cycling were testament to that, but i seem to have made some progress there which i am thrilled about.

the best and most significant improvements remain in my balance, strength, endurance, and fatigue. i’m hitting the gym every day and even added another 90 pounds to my leg presses this morning. i’m walking in a straight line quite regularly without toppling over. i’m cycling like a madman and have done several 40km rides thus far (i have hopes to do 50km on the weekend and am aiming for 100km before the end of the summer) i’m getting through my days at work without feeling like lying down on the floor in my office at 2pm to sleep. i feel strong, awake, and balanced. and the best thing that could have happened today happened when one of the guyswho lives at our shelter looked at me and told me i looked strong and healthy. he went on to say that whatever i’m doing, keep doing it as ‘we need you here for a long time’. how great is that.

last week our family went to a family camp in the muskokas. it was there that i learned something new about my body. we swam every single day in the most beautiful, refreshing, muskoka lake. and i know that the swimming made me stronger. this camp, camp koinonia, is built on a hill and you can’t go anywhere there without either walking up or down hill. for 4 of our 7 days there, i felt incredibly strong and tackled those hills full rip. and usually it was on the days when i pushed it hardest while swimming. so in light of that, i will be starting with a new physiotherapist who works in a place with a pool. i’m hopeful that this will lead to some even newer improvements. we shall see.

one last thing. there is a christian tv show called 100 huntley street that came to our home and filmed our family before we went to costa rica and asked us about our lives with MS and our faith in light of that. they will be airing that story on sept. 10 and i will be in the studio live that day to give an update as to how i’m doing.

back to koinonia to finish this post. during the week, one of my favorite people in the world, david tiessen, did the speaking. each morning, the dozen or so couples that were there gathered for one hour to discuss a christian theme. david chose to speak on the topic of wisdom. so every day, we dug deeper into the topic of the kind of wisdom that was modelled to us by Jesus when He walked amongst us. the kind of wisdom that seems foolish to most. the kind of wisdom that demonstrates leadership by servanthood. the kind of wisdom that demonstrates strength in weakness. the kind of wisdom that gives up your life for your friends. the kind of wisdom that is only found in the bruised, broken, battered body that was strung up on a cross.

so as is my tradition in ending these posts, and in light of what i was reminded of regarding wisdom last week, i will end in a prayer;

Lord Jesus,
i have been pittying myself because of my broken body and have questioned you for letting this happen to me
and you answered my prayer by reminding me of your own battered body and the beauty that is found there
help me to continue to embrace the wisdom that can only be found in weakness
and thank-you for hearing my prayer

amen

One thought on “august 16. 54 days post liberation”

  1. Richard says:

    heard you on Drew Marshall show today. I am 53, 10 years with MS. Post often to let us know how this treatment is working.

    Richard

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