Tag Archives: autumn

Sometimes you’re the windshield…

Hello again all! It’s Jess, back in front of the keyboard. Momma did so well with her updates, I’m grateful that she helped document the process. I’m not sure what good drugs I was on I was thinking that I was going to be able to do it, I just had no energy to update you properly myself.

Last she posted, I was out of the hospital for the second time, and going to the BMT clinic on Oct 5th.

October 6th, 2016 (Day +13) to October 16, 2016 (Day +23)

A belated happy thanksgiving to you all!  I have so much to be thankful for, not least of which are all the wonderful, thoughtful people in my life. This experience has been made tolerable by the lovely surprises and great support I have received in recent days. Thank you. Thank you. Thank you.

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Me and sis. You may notice that my right eye looks weird, I burst a blood vessel, adding to the overall loveliness I got going on right now. *wink*

Both Daddio, and the Sister were in town for thanksgiving and it was awesome to see them. Daddio even came to the BMT clinic one day so that he could see where I was spending so.much.time.

Fall is in full swing, and we’ve had some beautiful autumn days. Momma has done her best to encourage me to get some fresh air every day, and I’ve even been out for a couple of short strolls.

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Mom and I took a short stroll at Hog’s Back park.

Over the last 10 days, my time has been spent between home and the BMT clinic. I’m pleased to say that I haven’t had another admission to hospital since our last post.

As you may recall, I started out by having an appointment every day at the BMT clinic (day hospital), then it became every other day.  On October 9th, I was officially “discharged” from the hospital. This means that, I will no longer have appointments on 5 West, as part of the day hospital, and if I need to be readmitted I have to go through the emergency department like everyone else – they are no longer holding a bed for me.  It also means I will start to be seen once a week in the BMT clinic in Module L, at the hospital. (Much more like a doctor’s office than a hospital room.)

On October 11th, I had my first “post-transplant” appointment in Module L. Nothing significant to report. They do blood work at these clinics but we don’t have to wait around for the results anymore, and we were told that they would call if there was something urgent. So, no news, is good news.

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A work of art by mom. So.many.pills.

The song lyrics for how I’ve been feeling these last 10 days are: “Sometimes you’re the windshield, sometimes you’re the bug.” I have good days, and bad. Some days I have energy, some days I sleep most of the day.  I’ve been struggling with nausea, but the doctor changed my anti-emetics from “as needed”to several times a day.  It seems that that has taken the edge off of the nausea. The doctors assure us that all of this is normal.

Another common side effect – poor appetite. Although I’m not nauseous, my appetite is pretty much nonexistent. I’m mostly eating soup, jello, toast, and crackers and cheese. Everything tastes strange, and NOT in a good way. I wouldn’t call it metallic so much as bitter.

One other side effect that I’ll mention that’s popped up, is hyper-pigmentation. Busulfan causes this, and it’s under my arms, and in the creases where my body meets my legs. We were told it would happen, and that it would resolve itself.


MY new year’s resolution

pencil tips

Source: “pencil tips” posted by Dvortygirl is licensed under CC BY-SA 2.0

“I have a penchant for fresh notebooks and mechanical pencils. It seems every time I go to the store, I buy a new notebook.  I have dozens of them just sitting around.” – Richard Paul Evans

It’s already cooling off here.  Summer is winding down.  There are back to school sales everywhere, and even Halloween candy in the stores.

Invariably, almost 10 years after graduating from university I find myself feeling restless, like I should be packing, or moving, or shopping, or stressing.  I long for fresh notebooks, sharp pencils (I’m showing my age), and the promise of new adventures, and challenges.

When people talk about the start of a new year, I immediately think of the school year.  Christmas and New Year’s has always just felt like a way to break up the long winter to me.

Now that I am no longer in school, and have no children in the house that I’m focused on preparing, it’s no surprise that my mind turns to the list of changes I want to make in my life, and the skills I want to develop, the things I want to learn.

Some years it has been professional development;  a correspondence course that I think might help me to develop my career, or to fend off boredom from the job I have right now, performing similar tasks day in and day out.  Other years, I’ve endeavoured to get out more and meet new people, joining meet-up groups with others sharing similar interests.  One year, I started volunteering, another I decided that I wanted to become more active in the CIDP/GBS community.

No doubt that this list could prompt a whole other series of posts post about commitment, and follow through.  But let’s save that for another day, shall we?


Source: "Farmer's market, Jul 2009 - 01" posted by Ed Yourdon is licensed under CC BY-NC-SA 2.0.

Source: “Farmer’s market, Jul 2009 – 01” posted by Ed Yourdon is licensed under CC BY-NC-SA 2.0.

More often than not at this time of year, the first thing that pops into my head, is my health.  Right now is a great time for farmer’s markets, and locally grown food.  When I see the beautiful colours, and taste the cucumbers, squash, tomatoes, and beans that my friends graciously share from their gardens, I start to seriously wonder about the stuff I’m eating the rest of the year, and the stuff I’m eating in general.

I have no doubt, that food can be medicine.  This is not to say, that if one gets a sinus infection that they should not see a physician.  I take prednisone every single day, because if I don’t, I lose the ability to feel my extremities, and the strength to stand, walk, dress, and cut my own food.  But as someone with a chronic illness, who has tinkered, and tried a multitude of things natural and chemical in the quest for health and function, I KNOW that the way that I eat affects me.

Sugar, and processed foods in general, sap me of my energy and leave me feeling sluggish and bloated.  In the last few years, I’ve also experienced a change in my digestive system.  I was always able to eat anything I wanted, with very little consequence, now, perhaps as a result of a confluence of factors including the prednisone, it seems that everything upsets my delicate system.

I have tried three times to drastically change my eating habits.  Every time to varying degrees of success.  Historically, I’ve tried to cut sugar, and gluten, and stuck to whole foods with few ingredients.  In the 10 years since falling ill, I have improved my eating exponentially.  I read labels, look for ingredients I can’t pronounce, and try to choose whole, if not always organic, foods.  I try to choose the salad over fries, and water over soda, but I’m not as rigorous, or careful as I should be.  Growing up in a house where cheese whiz was a breakfast food (mmmm…cheese whiz), and living on cafeteria muffins and coffee through most of university, I had a ways to come.  I have a ferocious sweet tooth, and have struggled with candida for most of the last decade (f*ck thank you prednisone).  I’ve never met a baked good I didn’t appreciate.  I love food, but I’m also an emotional eater.  I eat to cheer myself up, I eat when I’m happy, to celebrate.  Eating is something I do with my friends, and I’ve realized that most of my social interactions involve food and drink.

When I look at it objectively, I am lucky that I am not heavier than I am.  But, I am the heaviest that I have ever been with 160 Ibs, on my 5’5″ frame.  My self-esteem is at an all time low (despite a bra that’s a full cup size larger!).  My motivation until now has always been my health,  consequently to the changes in diet to healthier choices I would lose weight, but then would also gain it back and then some when my eating would again go off the rails.

So, as the weather gets colder, work gets busier, and the city fills again with skinny, young, healthy university students, I can hear the fresh produce telling me to eat better and my skinny jeans yelling at me to get my ass in gear.

I’m trying this autumn to cut down on the sugar and gluten/wheat I consume.  I will avoid salt, and preservatives, and try to eat fresh, whole, and organic where I can.  I will drink more water, and tea to fend off the hunger the prednisone inspires, and I will be gentle with myself, but decided with my approach to food.

My motivation is still improved overall health, but this time it’s also weight loss.  Will this make it stick?  Will vanity be the impetus I need to effectuate long-term change?  I guess we’ll see.  But it can’t hurt.