Nightcap

This is what's waiting for me after I stop procrastinating. My Betaseron injection. Twist off the attached medicine bottle, add an auto-injector and it's good to go.

It's been over a month now (you can read about it here and here) and it actually hasn't been too bad. I haven't yet foamed at the mouth, my eyes haven't turned yellow and I'm assuming I'm not farting in my sleep as Steve is still sleeping in the same bed with me.

An online friend I met through Facebook mentioned something about the auto-injector having different numbered tips. I had no clue what the numbers meant until she brought it up. I've been using the number 12 tip (there are three tips to choose from 8, 10 and 12) but tried the number 8 tip to see what the difference was. I'm definitely using the number 12 from now on after my experiment. I find that I don't have any injection site reactions with number 12 (just a little sore patch but nothing too overwhelming) but I guess since number 8 doesn't inject deep enough, I have issues with the medicine staying too close to the surface of my skin. Anyway, I'm sure that's more than you wanted to hear. Maybe I should have warned you first and told you to plug your ears and hum. Next time.

These chips and dip are really good right now. Maybe I'll procrastinate a bit longer. On second thought, I just reached my hand in the bag and realized I've already polished off half the bag and almost half the French Onion dip. If the farting doesn't get me kicked out of bed, the French Onion breath might just do it.

Out of your mouth

ME: Bella! What are you putting in your mouth? Get those balls out of your mouth. I never want to see you sucking balls again.

This was the conversation I had with Isabella last night as I watched her almost eat a marble thinking it was gum (not that she can have gum but that's what she thought it was). It was one of those wait a minute, what did I just say moments -- one where I wanted to wash my mouth out with soap and totally forget that it happened. Hopefully I won't be having this same conversation with her again when she's older because after I said that to her the whole birds and bees story came to mind. Our kids grow up way too fast.

Weekend walks

I love where we live. We live in a community right beside lake Ontario and only about 30 minutes from downtown Toronto. When you drive into our subdivision, you are greeted by the beautiful view of the lake. It takes less than five minutes to walk to the shoreline. On windy days when I'm in the front yard gardening, I can hear the waves in the distance. It is so quiet and peaceful down here. We really are very fortunate to live where we do. If only we could swim in the water -- we can dream.

We took a walk to the lake this weekend to throw stones and explore.

Fave Rave: DQ Blizzards

One way to end off a perfect day is to treat yourself to a Dairy Queen Blizzard. My favourite is cheesecake and brownie pieces (my own mix and not one listed on the menu). Make sure you ask for DOUBLE STUFF! You won't regret it. Cheesecake and Oreo mixed together makes a good blizzard too and remember to ask for DOUBLE STUFF!

Up, up and away

After a long day, there’s nothing more satisfying than relieving some stress by pounding the crap out of something and watching it fly. Whoever invented this toy -- pure genius!

The Spoon Theory

I'm often asked what is it like to have Multiple Sclerosis. I think The Spoon Theory does an excellent job of explaining how I feel on a daily basis. I found a modified version relating to Multiple Sclerosis so I thought I would post this version that I found here. I also added the link to Christine Miserandino's story (the original writer). She suffers from Lupus but the two diseases bring on similar symptoms.

It's now 5:10pm. By 1pm, I had used up all but three spoons. I'm saving those for when Steve brings the kids home from daycare -- a spoon for each child and one for Steve because they deserve all of me.

The Spoon Theory

But You Don’t Look Sick….

modified version http://sunshineandmoonlight.wordpress.com/2007/12/29/the-spoon-theory/

To read the original story by Christine Miserandino go to www.butyoudontlooksick.com

My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have M.S. and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about M.S. She had come to the doctors with me, seen me getting MRI’s, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn’t walk another step, what else was there to know?

I started to ramble on about the medicines and the changes but she didn’t seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of M.S. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me…having M.S.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand? If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the “spoon theory” was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked her in the eyes and said, “Here you go, you have M.S.” She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having M.S. and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get M.S. feel the “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case M.S., in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become.I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of “spoons.” But when you have M.S. and you have to plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started the game yet.

I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has M.S.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, “no, you don’t just get up. You have to crack your eyes open and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your medicine and have energy for the day and if not you might as well give up on spoons for the whole day!”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn’t want to scare her too much in the beginning. Getting dressed is worth another spoon.

I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the day’s walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have M.S. — it’s just not that easy.

I think she started to understand when she theoretically didn’t even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons” but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who has M.S. lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on “spoons”, because you never know when you truly will need them.

I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, “Christine, how do you do it? Do you really do this everyday?” I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can’t ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared.”

It’s hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my “spoons.”

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room to waste spoons and I choose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn’t just good for understanding M.S., but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons.”

Always Looking Up

The one thing I miss about riding the Go Train to and from work is reading. It was a time that seemed to be purposely set aside for just that. And while I haven't read a novel in quite some time, I still buy the odd book in hopes of getting a chance to read it someday. When I was in Chapters a while ago, I saw the book Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox. I really enjoy reading autobiographies (The Diary of Anne Frank is what sparked my interest) especially when I can relate in some way to the topic so I knew this was one that had to go on my reading list. I picked the book up at Costco yesterday and can't wait to open it. I think I'll actually take a moment after writing this to look at it since Bella is napping on the couch and I have a fresh cup of chai tea made (ok, it's been re-heated once but only once and it's hot so it's as good as fresh in my books). Since I've been feeling pretty blah lately, I've been trying to surround myself with positive energy. I think this book might do the trick today -- the title says it all ALWAYS LOOKING UP!

I think I'll also check out his other book Lucky Man. I probably should be reading Lucky Man first but since I already bought Always Looking Up, I'll make it my starting point.

A quote from Always Looking Up by Michael J. Fox
At the turn from our bedroom into the hallway, there is an old full-length mirror in a wooden frame. I can't help but catch a glimpse of myself as I pass. Turning fully toward the glass, I consider what I see. This reflected version of myself, wet, shaking, rumpled, pinched, and slightly stooped, would be alarming were it not for the self-satisfied expression pasted across my face. I would ask the obvious question, "What are you smiling about?," but I already know the answer: "It just gets better from here."

The view from here

I purposely put the computer next to the window. I love being tucked into this little corner looking out at the world while the sun shines in, watching the birds fly by, the leaves rustle in the wind, dreaming that the laundry will magically put itself away -- one of my least favourite things to do because we all know it's going to end up right back in the laundry room anyway.

Farting chickens

Lucas turned five years old back in January and suddenly a whole new can of silly seemed to opened up.

It started with the word chicken a few months ago. Where did this addiction to the word chicken come from? School, of course. There's a game they play in class where the teacher says things like "if you're wearing red grab a block from the centre of the circle". The first kid to get three blocks shouts out "Winner, winner chicken dinner!" and so chicken was born.

One day, Lucas was playing with his sock on his foot and I told him it looked like a sock puppet. He started moving his foot around and decided Chicken Von Schlickin was the perfect name for his little friend. "Ewww, that's Chicken!" is another favourite. Who would have thought the word chicken would pave the way to months of continuous entertainment.

Not only is the word chicken a winner but so are farting noises, the words fart, toot and butt, and anything to do with things that are stinky. We've recently welcomed a new addition to the family -- Hoppy Farty Pants. I forget what sparked this creation.

Steve seems to be getting a kick out of all of this (re-living his youth perhaps) and even fed into the obsession by presenting Lucas with his first ever farting key chain -- a proud father-son moment. I'm just waiting for the whoopee cushion to make an appearance. I'm guessing I better get used to this if Steve still finds it amusing.

I was helping out in Luke's classroom not long ago. The kids were all outside while the teacher and I were inside prepping materials. Lucas occasionally brings things to school (a marker, small toy, notebook) even though I keep telling him that if he has somehow got by me in the morning with something from home that it should stay in his backpack at school. The teacher goes on to tell me how he had brought in a key chain one day and that she would normally tell him to put it away...yadda, yadda, yadda. I felt my face getting red, my heart starting to race and all I could think about was the farting key chain. Let's hope this woman's sense of humour is in check. Then she goes on to say how she thought it was so sweet that Lucas was carrying around a picture of his sister. The vomit that had started to burn the back of my throat began to creep back down as I realized she was talking about the key chain I have of the kids on my keyring. I forgot that I had let Lucas hold it during one of his morning meltdowns. It was the only way to get him on the bus that morning. Phew, another embarrassing moment dodged.

Where The Wild Things Are

One of my most favourite books as a child was Where The Wild Things Are by Maurice Sendak. I forgot all about this book until the other day when I was walking through the kids section in Homesense (love this store). There it was, staring me in the face so I had to buy it. It brought back a lot of memories of all the wonderful books I read as a child (or that were read to me) -- before Dora, Diego and Barbie Princess ever existed.