Here We Are

It's been some time since I shared photos with you. Or maybe it hasn't...but it doesn't matter because I have some to share now. These photos were taken by Corina, on our most recent trip to Kitchener. It was an extremely windy day and we had a hard time controlling our hair (even Jason and B). The only one without any trouble was Dude thanks to his doctor ordered cap.

 Here we are: Dude, Annie, Jason, B, R (formerly known as Nickel), Ladyfingers, Me and R (formerly known as Two Penny)

I've changed the direction of this post...the thought behind it...the subject (although it remains without a thesis). Here is the revised text -

We are currently accepting all currencies regarding my Dad's health: thoughts, energy, juju, prayers. If you can send it and it's positive, we will accept it. 

While we have no further news regarding the life of the cancer cells that invaded my dad's cranial nerves, depression, lethargy and a fever have taken over.

Me and the DMD's

Can you limbo? I have never tried but I once again find myself in limbo land with MS treatments. Therefore I have to assume that I'm good at limbo. This is a post about my ongoing relationship with the disease modifying drugs for MS.

At the beginning of September I finally gave up on Rebif, my second try of the "front line" disease modifying drugs for Multiple Sclerosis. There are four "front line" drugs, and three of them are pretty much the same. I had to stop Rebif because after months of on-again-off-again monitoring of my liver, my neruo decided that the long term health of my liver was more important than the minimally modifying nature of the Rebif.

Having tried two main treatments without success, I became eligible for a second line treatment - the daily pill, Gilenya or the once a month infusion of Tysabri. My opinion is that either of these treatments are considered to be secondary because they are newer and each pose certain risks to the patient (risks greater than the front line four). A screening process is necessary before beginning either Gilenya or Tysabri and I failed one for sure.

I am not eligible for the daily pill as an abnormal EKG, discovered during the screening process, is a definite contra-indication. I also tested positive for JC virus anti-bodies which is a warning for the once a month infusion (JC virus can lead to PML, a brain infection).

Are you confused? I am.

I have an MRI scheduled in December and a follow-up appointment with my neuro to discuss the risk involved with Tysabri. This means that Tysabri isn't completely off the table, but it can't be taken without dialogue.

Not all types of MS offer the opportunity to treat the disease course with a disease modifying drug. Having relapsing-remitting MS, I have the chance to lessen relapses with drugs. And I'm afraid that maybe my chances have run out. If you have been following along on my journey, you may remember that I don't like to not be on a drug. For me, as painful and scary as the drugs can be, they fit my lifestyle. I don't feel that I am in a position to research and introduce holistic or alternative options. These require energy, thought and financial resources that I don't have.

I'll let you know how it goes.

Emily

Keep a Lid On It

I'm working hard to keep a lid on it. The jar represents my life, a clear jar, so that I can look at it from the outside without getting right in the mix. The mix in the jar is all of the crap life serves up. The contents of the jar aren't packed in layers - it's all mixed around. Because the jar is clear, I am able to look at and think about the contents, analyze it, share it...I just can't dump the stuff (because then what would I do with my life?).

The key to keeping things in the jar is to not keep the lid on too tight, or too loose. Too tight and it could explode - glass and stress (crap) everywhere...really hard to put back together. If the lid is loose, it could fall off when I least expect it, releasing either a slow leak or a large spill.

So I keep the lid on...just right.

And right now the jar is full - again.

If you've been hanging around here with me for a couple of years, you may know that my jar always seems full. MS, infertility, life threatening infections, saying goodbye to work, saying goodbye to grandparents, depression...and that's just me. Jason has had his share of challenges this year as well.

Now we have a new challenge. As of last month, we (Jason and my family, Dude, Ladyfingers, Andrea, B and R&R) are facing cancer. My dad has brain cancer. As of today, he is not quite at the halfway point of what is considered his radical radiation treatment. Lots of radiation to his whole brain, with the goal of eliminating the cancer which has invaded major facial nerves.

I have added this to my jar...
and I keep the lid on...just right.

What Do You Do?

As of late, I've been mixing up the way I introduce myself to new people. I don't mean "introduce" in the basic sense of the word, but when a new person asks me what I "do" (when "do" refers to employment) I don't know what to say. Should I disclose my disease? I usually do, but lately I've wondered if it makes other people uncomfortable.

My response as of late seems to be a result of being "stuck" in the moment, and not wanting to leave the other person at a loss for words. For example, for a recent group gathering, I prepared myself ahead of time...I knew what I wanted to say.  But when my turn came to introduce myself to the group, I found myself "stuck".  My response, after cocking my head and looking skyward, was ..."Nothing".

Um yeah. Nothing.

"Emily" Antoinette

In the moment, it was entertaining to the group, but I didn't have a chance to backtrack or explain that it isn't as it sounds. I had wanted to say something about indulging my hobbies (indulging wasn't the exact word I had planned, and in hindsight I'm very glad I didn't say "indulging" as it sounds almost as snotty as "nothing"). But it's the truth - I don't do anything in an official capacity, and I couldn't if I tried.

How can I tell someone that I am home everyday because my days (even hours) are unpredictable and therefore prevent me from working? My MS is invisible to most people, so saying that I am on disability seems just as awkward as "nothing".

So does my answer of  "nothing" make the asker uncomfortable?

If I respond,  "I'm on disability" does this make the asker uncomfortable?

Does the answer, "I have MS and am unable to work" make the asker uncomfortable?

Does it really matter?

Maybe I think too much.

I am especially glad that I'm not in a position of deciding if I should disclose to my employer (current or future). I already feel bad that I had to leave my job when all of this came down.

It's Been Good

I need to finish the posts that I start. I also need to carry around something to make notes on for future blog posts - these things would make me a better blogger.

anyhoo

I have had a great summer. Whatever happened to me and my wobbles back in June (relapse or stress induced) didn't last long - maybe four or five days. My fatigue level has been manageable and my body is regulating it's temperature.

I'm going to repeat that last one - my body is regulating it's temperature...like a normal person! I know, I know, my house is cold like a walk-in freezer. But when I have been out and about (which was a lot last week) I haven't had to carry around a towel to wipe my brow! No wait, I have carried around a towel, I just didn't use it.

I realized this the other night and exclaimed to Jason, "The fire is down, the fire is down".* My thermostat is currently f-i-n-e.

*a "fire" was the word used by my first neurologist to describe an inflammation when I complained to him of symptoms returning...he said that "the fires were high".

So is there anything else that could possibly make this a great summer?

Let me list a few:

1. I finally got to test out one of those single paddler plastic kayaks and enjoyed it
2. I spent an afternoon at a water slide park and didn't get fatigued OR dizzy
3. I had a great birthday complete with a picnic, my first William and Catherine book and a cherry chip cake

I think that is enough for now. The summer isn't over.

In the Kitchen - Pizza Dough

Lately, Jason and I have been putting our bread maker to good use. We have had the machine for 10 years and have never used it consistently. We only ever make bread and pizza dough and never have results that would cause us to use it on a regular basis.

Until now.

Not only have we discovered a bread recipe (actually we have discovered 2 that we love, but are mostly using just one) but we have found a kick-butt pizza dough recipe.

For us, taste is paramount but amount of dough and ease of use (ie. does it roll out well) are also important.

So without further ado, here it is:

Ingredients:

1 1/3 cups water
2 tsp sugar
1 1/4 tsp salt
2 Tbsp olive oil
2 Tbsp cornmeal
3 1/4 cups flour
1 tsp baking powder
1/4 tsp garlic powder
1/4 tsp onion powder
1 1/2 tsp yeast

 Add ingredients to bread machine, according to manufacturer’s settings, and run dough setting. After the machine beeps, roll out the dough.
 
You can roll the dough into two 9×13″ pizzas (great for kid’s lunches!) or into two medium pizzas or a large pizza and an order of breadsticks (as instructed above).

Parbake the crust with a drizzle of olive oil on it at 450 degrees for ten minutes. Remove the crust and add sauce and toppings.

Changes we made:  we didn't have cornmeal on hand, but we did have some corn grits - and don't plan on changing to corn meal! We love the extra little crunch from the grits!

We don't parbake the crust, we put the full dressed pie into a 400 degree oven for about 20 minutes (depending on how thick we made the crust).

And don't forget that you can easily split up the dough and freeze some of it.

Life and Lemons

I really shouldn't be such a blogging delinquent. I have things to say, just ask Jason! However, I'm not sure if I have the right things to say...that is, I can't decide if this blog is the right place to put it. Right place, right time, or wrong place, wrong time. I had hoped that when I changed my blog name from Em's Bits to Recipes For Lemonade, I would allow myself some more "fun" posts. I felt that I had settled into a groove with my "new life" at home with Multiple Sclerosis and that I had discovered some great little things to take my "life lemons" and make some lemonade. It seemed like a natural and positive progression from where my blog started - "bits" on my experience as a newly diagnosed MSer (and a desire to educate others at the same time).

Oh yes, I want to do all of the above while still keeping some things private - my mom and my father-in-law read this blog and if I wouldn't tell them in person, I won't tell them on my blog.

So now for some big news...I think I might be having a relapse. On March 28, I blogged about the return of my swallowing problems. I am able to chalk that up to stress. Also around this time, and for some time after, I began to experience bouts of anxiety. At the time, I assumed it was because I was "busy" with things to do. And now, why I'm beginning to question if this is in fact a relapse, is the daily appearance of the wobbles. It came to my attention that I have taken 8mg of Serc on three (or more) consecutive days. The usual things that can bring on wobbles and I am able to control, are now out of my control...including sitting still eating my lunch.

From what I recall this is the last time I experienced a relapse . This time, I don't have the bone crushing headache. But I can add a recurrence of all-consuming fatigue this time around...with a full helping of stress.

If you are NEW (or if it has been too long since I last defined it) this is what my "wobbles" are:

I feel as if I am moving, as opposed to the world around me moving. This is also called "subjective vertigo".  I have experienced this from the beginning of my disease.

This is all my brain can handle for now...did I mention that the cog fog is also thick this past while?

Emily

In the Kitchen #8

This is a hands down favourite for both Jason and I: Rachael Ray's Cowboy Spaghetti! I'm sure that we have made it 3 or 4 times, and every time there are leftovers that we freeze for another day.

We might start calling it "Kickin' Spaghetti". Ground Sirloin and bacon...hot sauce and fire roasted tomatoes...Worcestershire and onion...aged cheddar and scallions on top. Since this is a Rachel Ray recipe, you only have to use a pot to cook the noodles, and the rest is cooked in a large skillet!

Follow this link for the recipe specifics

The recipe calls for a small can of tomato sauce and a larger can of fire roasted tomatoes. We haven't found the fire roasted tomatoes to be easy to come by, so this last time we substituted Sweet Onion tomatoes. There are lots of tomato flavours to choose from! Here is the Aylmer selection:

*beware if you select the Spicy Red Pepper tomatoes...we didn't use less hot sauce, and were on fire for days!

Our Rating:

Maybe I Should Go Out

Oh the swallows...

Too bad it isn't the name of a rockin' country band. Sometimes I say to myself, "Oh the wobbles", and these days I say, "Oh the swallows". So you may have figured out I'm not referring to birds in the backyard either.

Yes, it's my swallowing difficulty that I'm focused on these days. I've blogged about this problem before, like when I torpedoed fries and a drink out of my mouth in public or when I squeezed...grabbed...um, just read the story if you want to know ... yeah, THAT problem.

I had been doing so well:

I ate without thinking about it. I enjoyed my meals. I didn't have "returns" in my mouth.

Now, I have to be conscious of chewing, moving food to the back of my mouth (the tongue moves the food).

A quick video on how swallowing food happens

I regurgitate food that is "sitting"in a la la land...food that is just "hanging" out in a dangerous spot. I drink more water while eating.

But I haven't done anything embarrassing or provocative...dare I say it's been boring? Maybe I should go out for dinner and see what happens...

MS Walk Winnipeg

I currently have a post sitting in my draft folder. It isn't done, and I'm not sure that I am going to finish it. It was difficult to get as much typed as I did as the topic is about my feelings towards the upcoming MS Walk. My feelings are jumbled...very jumbled.

In short, Jason and I can't decide if we want to participate in the walk this year. Our reason has nothing to do with CCSVI funding and the Multiple Sclerosis Society of Canada, so let's not get into that. It's about location, competition and the team unit...and let's not forget expectations which actually sums up the other three reasons.

The Walk is scheduled for May 6 in Winnipeg.

I know what I need to do - I need focus on why I walk: I walk to experience community and to raise money that goes towards helping people who live with MS.

In the Kitchen #7

I haven't shared a meal recipe with you since March 25 2011! Other than a couple of snack food posts, I have neglected this area of my blog (or deleted the photos before I had the opportunity to type up a post).

Well wait no more, I'm here with another Rachael Ray pasta recipe!

This is Rachael's Not-Sagna Pasta Toss . The goodness and comfort of homemade lasagna: noodles, cheese, and meat sauce.

What we eliminated:
 - fresh basil (we didn't have any)

What we weren't sure of:
- was the Marsala we used dry or sweet

What we would do differently next time:
- add some mozzarella cheese (the recipe calls for ricotta and parmigiano reggiano

Our rating:

Fatigue?

I'm writing a post about about MS fatigue, while fatigued.  How's that for writing about what I know!
And let me just say - I know it. I don't understand it, and neither do the specialists, but I know it. Fatigue is the most common symptom of MS, and is experienced by approximately 80% of people living with MS (it is also a primary cause of early departure from the workforce).

There are a couple of theories on what causes MS fatigue: a special fatigue, referred to as lassitude, is unique to people with MS. Unique and thought provoking. One of the top theories is that the fatigue is related to the activation of the immune system: the immune system releases substances to carry messages between cells. Another theory (my favourite) is that an MS brain has to work harder to get the same tasks done as a non-MS brain (working harder means using more parts of the brain). The fatigue can manifest in two ways: a general feeling of tiredness or muscle tiredness.

So what is so "unique" about it?

Lassitude:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

This is not say that there aren't other factors that can cause fatigue in MS. Certain medications, quality of sleep, and a need to expend more energy for simple tasks (like brushing your teeth) can also play a role. MS fatigue, much to the frustration of the MSer, can be misinterpreted as depression or a general lack of trying or laziness.

I experience both a general feeling of tiredness and muscle tiredness. Some days, it's as if my limbs are cast in concrete: every step is an effort, I'm slower moving and throw in the towel a lot sooner. More often than not, these "concrete" days are accompanied by an overall cog-fog, but cog-fog doesn't always come with "concrete". With MS, you never know what you are going to get. Or when you are going to get it, which is when I experience the worst of my MS fatigue - the fatigue that sucks me down.

As I listed above, it can come on suddenly, unexpectedly. For me, my face changes. My eyes water. I start to feel anxious and scared; scared that if I fall asleep, I won't wake up again. It's as if I'm sinking. I want my bed. I need my bed. I can't get my thoughts out clearly.

MS fatigue is a real part of MS. It's hard for us to explain, and I'm sure it's hard for you to understand.

Something For You to Try

Have you heard about Post Crossing?

The premise is quite simple: send postcards to receive postcards. Why? It's fun to get mail. What does it cost? the cost of an international stamp and a postcard.

My first 2 postcards: Seattle, Washington and Vienna, Austria

A simple concept in complicated times. Once you sign-up (it's free) you can request your first random address (click here to see the international reach of Post Crossing) and a brief "hello, this is me" from the person you are sending your card to. Once your "receiver" registers that he/she received your card, you can expect your first card to be delivered to your mailbox along with the usual flyers and bills.

And this is another one of my Recipes For Lemonade.

To see my first Recipe For Lemonade click here.

Perking Up a Standby Meal

French Toast has always been a super quick and easy supper for me. It was the perfect thing to eat before running off for the evening shift at my part-time job, and even nowadays when time is aplenty, but energy is lacking.

In my 20's, I loved it when I learned to add vanilla and cinnamon to the egg mixture - what a difference it makes! And now, in my 30's, I learned to add syrup to the mixture! Eggs, milk, vanilla, cinnamon, and syrup!

To see the full recipe for the above pictured French Toast, click here.

The other "new tip" that I discovered in this recipe (that I tried since the oven was on anyway) is to brown the egg soaked bread in the frying pan, and then transfer it to the oven to warm the rest of the way through. I did this, but I think I left the bread pieces in the frying pan for too long, as it was a bit tough.

I'm Scared For My Brain

My brain is often the butt of family jokes. I even make them myself. Generally, the jokes come about after I have done something strange or said something strange. Or better yet, when I do math in my head faster than anyone else in the room (pre-MS, math was NOT one of my strengths)

But sometimes I worry about it. I have noticed lately that I am processing written words incorrectly (and seeing words that aren't there). Last night, I saw the word "should" and I read it as "shold" (rhymes with cold) and I didn't understand it. I read it a couple of times before I realized my mistake. This is only one example of something that has happened to me a few times in the past week.

Tonight, while making dinner, I had another "moment". I got out a regular frying pan (not the one we usually use), chosen for size and flatness. Cooking something new, I had to read the instructions, which said to use a non-stick frying pan. "Perfect", I thought, I picked the right frying pan without even knowing.

Olive oil in, Chinese dumplings in, just add water and cover. So easy!

Until I had to turn the dumplings over. They were stuck to the pan - stuck. That's when it dawned on me: the instructions said to use a non-stick frying pan. Not a pan that doesn't have a non-stick coating (which I selected) but a pan WITH a non-stick coating. I processed it incorrectly and was confident enough in my processing that I mentally patted myself on the back when I did read the instructions because I was one-up, so to speak.

Early on in my diagnosis, I didn't trust myself when reading instructions, in particular recipes. Not that there had been an event to give me pause, I just wasn't confident.  I needed to read and re-read. Well now I have an event - and it scares me.

Making Room

In the previous post, I mentioned that Jason and I are moving forward. But for myself, I started to move forward back in the fall. Maybe it wasn't so much of a moving forward action, but it definitely was a "this is no longer where I am and I accept it" action. I cleared out clutter from the previous stage of my life, in order to make room for things in this new stage.

Sounds a bit dramatic, doesn't it.

I purged the basement of pounds and pounds of design magazines, counter top samples, paint chips, and product catalogs.

In life before MS, I used design magazines for my own inspiration and to help clients visualize an idea. I could never have enough samples and paint chips for when people came here to ask me for decorating advice, or for when I was doing in-home visits.

I don't need those things anymore.

Now, in life with MS, I need space for zippers!

And that, is a recipe for lemonade.

New Year

My word, it's been a long time since I was here. It isn't that I haven't thought about saying "Hey", I just couldn't seem to put the words together. And when I finally decided I had the brain power to put some pictures together for you, I discovered that I deleted the photos from my computer (the next time we make Cowboy Spaghetti, I'll take photos again).

So here I am now, at the beginning of a new year...may 2012 be a wonderful year, in particular for Jason and I. We wish it for you as well, but we really NEED this.

For all of 2011, Jason battled anxiety. Eventually, the other shoe dropped: he was out of sick days and spent three months off work. Now in a new role within Transit, Jason is back to work and things are looking up - and we want to move forward.

I'll see you again soon :)