Giveth and Taketh

As I plan for the wedding,  the FSH is rearing it's ugly head. Sudden rapid periods of deterioration have left me challenged to bend at the core or any joint. As much as I am happy with my love, I wonder each day if I am doing him wrong.  What will be left of me and this frail body by the time we say I do?

I worry each day if I will be able to walk down the aisle or hold my bouquet.  I try to stay positive and try abd think past my reality.  I know FSH will fight me every step of the way.

Extreme weather and FSH Muscular Dystrophy

Ah,  Canada. The country that I adore. You sure know how to do extreme weather!

I am lucky enough to live on the west coast of Canada,  the most spectacular place on earth. But I am spending the week in Ontario where it seems Mother Nature has spent a little extra time

It's freezing.

I arrived to - 5 and it's dropped to - 40. So pretty darn cold.

I find extreme temperature does not bode well with my FSH.. Or maybe I am spoiled with the mild temperature of the west coast. But,  being here has stiffened my muscles. And, has made me fear every step in the icy and snowy sidewalks. But I keep going, like another mountain to climb. Another challenge to conquer!

I have also discovered walkers don't do well either. The wheel slip in the ice like on a skating rink. I don't know how others do it.  I applaud you. Talk about an extreme sport!

Congrats to all those with a disability who weather all storms,  including real ones. You are champions.

FSH Muscular Dystrophy: I am a hero... shhh.. don't tell :)

Another late post. Hoping to get better at this now that I have installed the Blogger app on my phone. Technology is grand.

I wanted to update those of you who are following along on this journey with me... thanks for that by the way. Adventures such as these are always better with others. 

The complexities of this disease leave those who have it, and those who are trying to care for people that have it, confused and frustrated. You are not alone. This is surely a steep journey with lots of bumps along the way. But the view can often be enlightening.

It is only recently that I realised that this disability makes me, and everyone else with a disability, a hero albeit a reluctant one. We feel that being born with something that you have to live with isn't heroic. But now, I believe it is.

I often thought I had to do something extraordinary to be inspiring if I had a disability. I read about amazing people who have turned this disease into a great opportunity to be motivational speakers, become public advocates and lobby governments for change. They invent things and break boundaries and I didn't think my getting up each day and living meant much. But it does. 

A person with a disability faces their own struggle each day with each task. I know now that the determination not to give up, not to just stay in bed is actually a really big deal. When walking up a driveway is like hiking a mountain and lifting your coffee cup is like lifting a boulder, it is a big deal to get up, face the world with a smile and move past all the hurdles each day brings.

So I am going to give myself a pat on the back and quietly accept I am a hero too. Just like the thousands like me who do not know what each day brings with their disability.

Since my last post, I have experienced a great deal of muscle loss in my legs and arms. My left arm doesn't function properly and I can't bend at my knees well because of the muscle loss in my calves and thighs. FSH keeps you guessing, you never know what you can't do until you try to do it and realise.. well, you can't. But on the upside, I am still independent, still working and still doing as much as I can.

On the research front, I recently attended the Friends of FSH research and patient meeting at the University of Washington. I heard from a number of leading researchers in FSH. These are our FSH champions and I have no idea where we would be without their dedication to unravelling this disease. They are moving forward in leaps and bounds in my opinion, studying drug therapies and creating viable mouse models and learning more and more about the evil DUX4.

Until next time, stay happy and at peace. You are heroes too!

Long time no...fall.

Well, it's been a bit of time since my last post. I am happy to report, I haven't fallen since. 

What a milestone.

I am sure that isn't nearly exciting enough of an update.

I can tell you that I have been adapting well with the walker at work, which has been an interesting adventure. People still wonder why I need it as I am not using it all the time. But they are scared of me running over their toes, so I do get my way in meetings.

I have started organizing my first fundraiser. No idea why it is so anxiety provoking for me. I hate asking people for money let alone anything else. But I think of all the new FSH champions I have met and I try to focus my asks for them. It makes it easier.

I'm back in the relationship world. Very ironic how life works out. Getting back in a relationship with someone when you are at the worst part of FSH... (to now). Well, whatever happens, I have learned that I am strong enough to handle it.

Progress of the disease, well I am still fairly independent. Stairs, hills and uneven surfaces are still not my friends and I have had to turn back at one or two events because of inaccessibility. I am gracious about it even though the event organizer is mortified. It's a learning experience for everyone.

The pain is manageable but I have started an anti-inflammatory diet which has been helpful. Anything to keep the pain and progression away until there is a treatment. 

Ah, a treatment. Still looks promising. I hope it's in time.

Until then I have been blessed with a wonderful, quirky group of family and friends who make this journey worthwhile. Thanks to all of you!

The Silver Lining

Yes, it sounds cliche I know. But for this post, I have to share some cliches, or fortune cookie wisdom, as I call it. No bad thing should ever go without a good thing taking place or a lesson of some kind, hence the silver lining.

Sometimes you really have to search for it. The key is that you should go search for it. Each thing, even a bad thing, leads to something else... often something much bigger. Some call it the butterfly effect.

In any case, I broke my wrist in September. This may not seem to be a big deal, lots of people break their wrists. But for someone with FSH, it can lead to much more, as I soon found out.

How I broke my wrist is stupid and small and who would have thought something so insignificant like trying to move a fan could have such ripple effects, but it did.

First of all, let me say that the fan in question should not have been there. Lesson #1: Don't put off for tomorrow what you can do today. I had been meaning to get rid of that fan for the past two years. But kept waiting for the perfect replacement and was too lazy to dispose of it. I should have gotten rid of it. But I didn't and so in trying to move it, I tripped on one of the awkward "accident waiting to happen" legs, and tried to break my fall on the unstable stem of it which broke in half, sent me down to the ground where I landed on my wrist and shattered my radius bone.

So now I'm on the ground in the unceremonious "I've fallen and I can't get up" mode. Phones nowhere in reach and all alone. Lesson #2: Women are like tea bags, you don't know how strong they are until they get into hot water. So I regrouped and bum-walked my way to a phone, pulled a McGyver move with a broom handle and managed to open the door. 

The rest is the usual trip to the ER followed by a cast followed by an xray that said the cast didn't work followed by surgery followed by heavy drugs and a the life changing moments that ensued.

As I said, broken wrist.. not such a big deal. But when you have FSH and are at the point in your "adventure" where you need both hands to transfer from seats, this is huge. Seats, by the way, includes toilets and the car.

Imagine that. Now I had to get someone to lift me off the toilet at the hospital because I was stuck. Embarrassing. Lesson #3: Always have clean underwear and shave your legs. OK, that second part was just for the girls.

Talk about your independence gone, in the snap of a finger. Lesson #4: One moment changes everything.

Thankfully, I had not hastened to sort out some mobility issues at home in anticipation of what may come. Lesson #5: Do all you can do while you can.

So I was, in fact, able to go home where I stayed for the next eight weeks. Eight long weeks. Thank god I was able to work from home or I would have gone out of my mind. I had to get my mom to move in with me which was really hard for me, but I think it finally made her feel like she was doing something, anything to help me. For me, it was humbling. Lesson #6: It's ok to ask for help sometimes.

Sadly, the laying on my back, the trauma of the fall and the surgery for which I was wide awake, the effects of the nerve block and far too much time to think, left my FSH in a what felt like a rapidly progressing state. My arms got weaker, my legs got weaker and my core got weaker. I had to get a walker and a boosters for the bathrooms at work and at home. I couldn't get past imagining a life of asking for rides, waiting fro help and no freedom. Lesson #7: Suck it up. It could always be worse.

I was so worried about what people would think of me in this new state. The walker, the booster, the limping... but I got to work and was embraced by all those I left. And was greeted by another colleague who, sadly, herniated a disc and had to use a walker after a five day hospital stay. Lesson #8: Shit happens to everyone.

So I am back at work and struggling a little, but I am back at work. More importantly, I am back to spending time with friends and doing some of the things I enjoy. I had to buy a new car so I could get in and out easy (how painful was that... not!) and have my VIP parking pass (disabled sticker) which really came in handy during the busy shopping season.

Most of all, it reminded me of how resilient I, and all those with FSH, are. I learned I had developed a pattern for when bad things take place. I cry, I mourn, I take a deep breath, I pull up my socks, I get on with it. Lesson #9: Life is too short to be on the sidelines. Get in the game.

And, my parents who as you know from reading previous posts, found some strength too. The broken wrist and all that came after it moved them slightly out of denial and thankfully made them realize, I'm doing ok. Lesson #10: Reality is what you believe it to be.

So out of all that came some good. I could do without the ugly 3" scar that came along with this. But I am grateful for the lessons it reminds me of.

Gone.. but not forgotten

Sorry for the delay in posting, I can't believe it's been a year!

Lots of updates and insights, but you will have to wait a little longer as I am nursing a broken wrist. Which, for someone with FSH, is much worse then one might think.

One handed typing is tough.. so I hope you will stay tuned as I am on the mend.

What a year.. with the best yet to come.

This has been quite a year, hasn't it? I wanted to thank those of you who sent your kind thoughts and expressed concern around my last post. The boyfriend is doing well, physically anyway. Unfortunately, his recovery has made him restless. I wonder if that is the worst thing, the inability to do the things you want. Even the most basic things. The experience made me wonder about how much longer I have the ability to do what I want.  

In the last few months, I have seen the FSH progress more rapidly in my body. Or at least it feels like that... the same as when you get to the end of a roll of toilet paper. The end seems to come faster than ever.

I am struggling more now. With stairs, chairs, cars, you name it. It feels like parts of my body are clamped with a vice. But I would take that over the parts I can't feel at all. Nothing worse then not being able to will yourself to move.

But on the upside, and there is always an upside, I am happy. This is the time of year we reflect and as I do so, I can only see the support of my friends and family, the beautiful children in my life who remind me of less complicated days and the many outlets of hope and happiness I have discovered.

In the midst of change, I have chosen to take on an advocacy role with my FSH. This is the time where fear has no place. For all those people with FSH like me who have spent time quietly hiding their condition hoping if they didn't say anything no one would notice, I want to let people know of this condition. I want to let people with FSH know there is nothing to be ashamed of. The more mainstream we make this condition, the easier it will be to live with it and more importantly  find a cure.

This leads to the theme of this post, hope and a future without FSH. We are getting closer. This recent partnership between Fred Hutchinson Cancer Research Center and GlaxoSmithKline to develop therapeutics for FSH is a huge step in the right direction. There is no more 'if' for a treatment, now it's 'when'.

I will continue to write in the new year and continue to find new ways to spread the word. I'll keep you posted as this is a journey we share together.