two days in

I have successfully completed two days of being "one lorazapam down". I have napped for almost a total of four hours over these days.

I need to stop thinking about it. I am very focused on what MIGHT happen without it. I don't want to return to that condition - the feeling of a constant head bob and shake, feeling scared to turn my head without turning my whole body, sensory overload.

I am also scared of losing the sense of independence that the lorazapam has given me. Sure, I can't do even half of what I would like to do, but at least I can do some things. It was only two weeks ago that Jason and I were talking about how I should start to go out a little bit everyday on my own. What about that?

Hesitant,

Emily

Two posts in one day

I had a bit of a lull in my "bits" because I have had my mind on a work related situation. You may have noticed that I rarely share anything that relates to work. This has always seemed a bit strange, I'm sure, and even I have thought so. My return to work is directly related to my medical story, so how can I not share it with you if I am committed to sharing everything else related to this disease.

I don't have an answer.

This past week-end, some recent events prompted me to consider the state of my employment. As mentioned before, I am not one to sit idly by when things aren't right. However, in light of the debilitating effect of stress on my physiological state, I made a promise to myself that I would choose my battles wisely. I stayed true to my promise until this week-end.

But - then today, I received the gift of hope for improvement in my day-to-day living. This gift will require sacrifice, and hard work. I have no idea what the next few months will bring as I start eliminating drugs from my system. I will also begin a new drug therapy for long term disease treatment. I am going to try and treat the symptoms instead of trying to live with the symptoms.

Thank goodness you can make and break promises to yourself and not feel guilty.

It's going to be a new year.

Emily

my present

I received one of the most awesome Christmas presents today. I saw a doctor today (ENT, otolaryngologist whichever you prefer) who said that there is still a chance that we can make my "wobbles" more livable. He tested, he listened, he read my chart, he drew a diagram on a white board, and he said that we can try some things!

Well, I never thought that I would say this, but referring me to an ENT appears to be the best thing that the MS doctor has done for me! Yes, that's what I said.

He has recommended that I go "whole hog" on rehab for my "issues". Rehab will involve what the doctor described as "starting over: taking me back to my one year old self, and re-learning everything", with a vestibular physiotherapist. I will also be starting some sort of exercise, such as yoga, tai-chi, or if I feel so inclined, martial arts.

So I've been seeing the wrong doctor all this time. Ok, not really, but when compared to a neurologist, the ENT seems to know more about the effect of lesions in various areas of the brain, as well as what can be rehabilitated in the brain, and what can't.

My "wobbles" (he even knew that word!) are caused by demyelination in the PONS and brain stem. The PONS sends and receives signals from the ears, the eyes, as well as from the ankles through the spinal cord.

There is a catch though. I have to stop my lorazapam (ativan). He only prescribes suppressants for acute, short-term "dizzy" events. As I suspected, there is a possibility that my long term use of this drug has ruined or reduced the ability of my "brain to re-train". There certainly isn't anything that we can do about it now. I was doing what I could to make my life bearable, and the doctors that I consulted with said that the drug was fine.

So starting tomorrow, under doctors orders, I am cutting my daily dosage in half for one month. I am scared. The lorazapam works for me...it mostly controls the wobbles for me. But, if I want to think long-term, and returning to normal...I have to suffer now.

On January 7, I will have some tests (an ENG and a Posturography) to learn the extent of my difficulties. An ENG (electronystagmogram) tests the relationship between balance and eye movement.

It looks like things are going to get interesting!

Emily

the results

My face was a happy face this afternoon. I have been given the ok to start an interferon!

woohoo!

I will require weekly blood tests for a bit, and then bi-weekly, and then monthly, just to make sure that nothing goes sour (or skyrockets). Normally, monthly blood tests are performed for the first six months on an interferon drug.

I will also have to follow up with the liver specialist in one year. This means that I do not have auto-immune hepatitis, but I do have the beginnings of fatty liver disease.

So now I am going to kick-start the MS clinic, and let them know that a letter is coming from the hepatologist with the diagnosis, and recommended guidlines. I'm not going to wait for them to phone me.

Somewhat relieved,

Emily

another blog

The other night, I updated my "interests", as listed here on blogger. I decided to include MS as an interest. This means that bloggers with similar interests can find each others blogs. When I searched blogger using MS as the criteria, a particular blog caught my attention.

http://judodoug.blogspot.com/

Doug is from the east coast of Canada, and he writes two blogs. I read a number of posts on his MS blog, and found myself moved by two in particular. Moved to tears...tears of sadness, tears of familiarity, tears of reality. In his post from February 7, 2006, Doug discusses his current struggle through dizziness, reactions of others, and "discovering what it means to have MS".

He said so many things that were familiar to me, including taking anything else the disease had to offer, except for the dizziness. I have said that! Dizziness is not something that is easily quantified by someone else (does that make any sense?) who has not suffered from it. He discussed realizing that he has a disease-when he finally had to alter his life, because he has MS.
For myself, I am forced to alter my tasks, my plans and my reactions to better suit this disease. I haven't yet had to physically alter anything. No wait, now I sit at the head of the table, or any position that limits my need to turn my head from side to side. Yup, it's necessary.

The second post from Doug that hit home with me was on February 9, 2006. It is a rant against the health professionals who don't know what to do for him and avoid dealing with him. He mentions how the diagnosis comes with a promise of a manageable disease, but no one can figure out how to manage it or him. Promises start to look like lies.

I have already posted on these same topics, and I am sure to post on them again. But when you are told that MS is a "personal disease", and that no two people are going to experience the same thing...you feel alone. And not only alone, but it allows you to question the diagnosis and the symptoms. So to read that someone else is thinking like I am, and feeling like I am, and fighting like I am...I didn't feel so alone. I stopped questioning my current state...temporarily.

Catch you tomorrow,

Emily

update

This is a real update.

I have an appointment with the liver specialist on Thursday afternoon. So on Thursday - I will get some answers.

I haven't been having the greatest days lately. After ladyfingers and dude left, I physically crashed. It took a good four days to start to get functional again. The four days were days when as soon as I got out of bed, my head was bit spinny - no medication would help.

I had another big week-end this past week-end: the cookie marathon took a lot out of me. The original plan for the week-end was to attend a craft show, but by 5 pm on Sunday night (the craft show would start at 7), I knew that I was out. I felt like I was rocking back and forth, and walking on a merry-go-round at the same time. It was the first time in ages that I was scared to turn my head.

I didn't like admitting that the craft show was a no go. But not only am I saving myself from further physical and emotional decline, I am saving other people from attending an event (or something like it) that we may have to leave on account of my condition.

Today was also a not so good day for me. I had a small list of tasks, all to take place outside of the house. I was pro-active, and took all my medications to help prevent physical decline - but sometimes - there is nothing that can be done. Luckily, I had C. with me, and she drove me home. We had been on a site visit to a kitchen and bath reno, and I guess that I did too much thinking, and moving around in a tight space. I knew that I was in a bad head-space when we left the house, and I wasn't sure if just sitting still for a bit would correct it. I hated having to inconvenience C. to get me home.

Yes, today was pretty basic stuff. That is what scares me about my situation. I'm not sure if it will get better. When we got home, I rested on the couch, and took it easy. I made pancakes for dinner (something that is simple for me to do, and doesn't require a lot of moving around the kitchen), and right now, I'm still wobbly. *shrug*

Off to the couch I go...

Emily

the FRYAMM report

I think that I need an assistant to keep up with my bits!

Ok - let's change things up a bit here. In the spirit of the Mitchell Report, Jason and I have created our own list of MLB players.

This is a list of men who are NOT on the Mitchell Report, whom as far we know, have not attempted to lengthen or boost what should be notable careers with performance enhancing drugs. We attempted to come up with names that were predominant in the juiced era. You will find both hitters and pitchers on this list. The criteria we used was a combination of homeruns, RBI's, batting average, and years played.

Frank Thomas
Ivan Rodriguez
Ken Griffey Jr
Albert Pujols
Mike Timlin
Kenny Lofton
Cal Ripken Jr
Mike Piazza
John Smoltz
Greg Maddux
Edgar Martinez
Carlos Delgado
Vladimir Guerrero
Andres Galarraga
Craig Biggio
Derek Jeter
Tom Glavine
Julio Franco
Rickey Henderson

Almost made my list:
Albert Belle
Juan Gonzalez

Not on my list:
Alex Rodriguez (I still think that his bats are suspicious, however, he could be the real deal, like Griffey).

Emily

*please keep in mind that in-depth research was NOT performed, and all interviews were OFF the record

more on skunks

Just a quick bit - more to follow in a day or so...

Sometimes skunks invade your house. Their smell permeates your very being - it clouds your happiness and ruins your appetite. Worst of all, the smell can travel home on the shoulders of others who came to visit. Friends who were at your house to frolic and play in a festive wave of sugary delights are now burdened with the same scent removal task.

*sigh*

But - strong people move on despite the stench. They spend 14 hours making colourful festive snacks (with time taken out for one feel good movie). They giggle and lick frosting off of their knives. They snicker at each other's creations - and don't forget to taste test the product, numerous times!

skunks - what are they really good for?

Emily

stress and skunks

As you may have figured out, I need (and want) to understand MS. I figure that by learning and discovering everything that I can about it, I can handle it better. Yes, that means even the aspects of the disease that at this moment I don't need to worry about. I believe that a lot happens to a person in their sub-conscience...what I mean is, you can work things out within yourself, without knowingly doing so.

One of the most important things that I have read and been told by others with MS, is that by reducing and eliminating STRESS you will have better control over the exacerbations (ie. numbness, fatigue, memory).

Stress is another one of those "things" that can often be found rootin' around in your sub-conscience, causing havoc on your body, when you likely didn't even realize that you were stressed.

Ok - so where am I going with this...I have been trying really hard to eliminate and reduce stress in my life. For instance, if I am unable to have dinner ready for Jason and I when he gets home - THAT'S OK. If the dishes from dinner last night don't get washed until tonight - THAT'S OK. If the new box of taco shells drops on the floor before we eat any of them - THAT'S OK. If I have to ask Jason to help me get my lunch ready, THAT'S OK.

The examples above may all seem trivial to you when you read them here, but to me, they weren't always so trivial. Now, let's step it up a notch.

I have always been a person who has an opinion that I like to share. I almost always back the underdog. I have refused service to patrons in a full restaurant for leaving their baby in the car, while my boss stood by in disagreement. I have personally battled sexual harassment in the workplace.

Well, I am on a new path to change this part of me. I will keep you updated as I conquer myself!

But what should I do when I am the underdog? What should I do when I am being ignored and left out of things? What should I do when I'm not invited to a celebration of good cheer, friendship, and annual achievements? What should I do when I feel that my contributions have gone unnoticed and and as a result feel discriminated against, pushed out?

Well, I have the answer...NOTHING. Yes, I am learning to choose my battles. When an old battle resurfaces, the offending party is obviously lacking some human attributes...and didn't learn anything before. Dude has always said, "You can't win a pissing contest with a skunk".

And some skunks aren't worth running over because they will just stink up the whole building.

I love my sub-conscience, because this week when I found myself grappling with an old battle, I awoke one morning to hear my inner voice saying, "It's ok Em, it isn't worth it." And I believed it! I didn't challenge my inner voice! I comfortably let the battle go.

*sigh*

Emily

and yes, this post is related to the previous post about where I was last year.

oh Christmas balls

No, this isn't the post that I intended to follow the previous post with - but this definitely belongs on yesterdays....

Last year decorating the Christmas tree was like playing on a merry-go-round...AND IT'S THE SAME THIS YEAR!

Trying to get off the ride,

Emily

where we were...

Hmmmm, I have a couple of bits on my mind. They are unrelated to each other - or are they???

Jason and I were talking the other day about where we were at this time last year. We both remember being very angry and disappointed in people...family, friends, neighbours, and co-workers alike. Aside from the support of a select few, we felt isolated and betrayed.

As with life, we learned a few lessons:

1. It's quality not quantity.
2. Sometimes compassion is where you least expect it, and weren't even looking for it.
3. Time spent together should not be a gauge for the amount of love and concern expressed in times of crisis.

We were also excited that ladyfingers and dude were coming to Winnipeg for our very first FryerRamm Christmas at OUR house. We eventually overcame the sadness that it would not be a FryerRammCharette Christmas at OUR house, and vowed to make the best damn potato bread ever for those who would be here to enjoy it. But yet again, circumstances beyond our control took over, and Ladyfingers ended up in the Kitchener hospital over Christmas.

This time last year, we also experienced a loss. My grampa, William Hamilton, passed away.

We had excitement for the coming new year. Armed with new information and medical guidance, we were ready to grow our family (I refuse to say "start" a family, because I don't believe that a minimum of 3 persons should be the definition)!

So that is what Jason and I cumulatively remember. Personally, this is what I remember:

1. I had to keep one hand on the shower wall when I closed my eyes in the shower.
Now, I rarely feel the need to use the wall to orient myself!

2. I had to guide my right leg into my pants.
I can keep both hands on the waistband and my legs can get in just fine on their own!

3. I had to ask others to do my Christmas shopping for me because I could not handle the stores.
I have enough good moments that I can go to stores at certain times!

4. I had to eat or drink perfectly upright.
Last night I ate a brownie while reclined on the couch!

5. I frequently felt as if someone was standing on my chest, and had to take in a lot of deep breaths
No body is standing on my chest now, especially when I am reclined eating brownies!

Continuing to have end-of-year wrap-ups,

Emily

The post that may or may not relate to this one will likely be the next one.

they know me!

I just got off the phone with the liver doctor's nurse, and she remembered me!

I said, in my always cheery and friendly voice, "Hi, it's Emily Fryer calling. I had a liver biopsy 3 week ago..."

And then I was cut off by the almost-as-friendly-sounding-as-me voice on the other end, "...and I don't have the results yet."

She said that Monday is her day to pester for results, so hopefully she will be calling me next week. Then she asked me how the biopsy went, which further solidified in my mind, that she knew who she was talking to.

Let's assume that she remembers me for my cheery and smiley disposition that was momentarily shaken when I was told that I would be having a biopsy...and not for my sad, sad, situation.

Still freakin' smiling,

Emily

gone

Ladyfingers and dude went home the other morning. *sigh*

The visits are always too short.

Emily

update

I'm still waiting.

Anxious,

Emily

2008

Lately, I have found myself more aware, than in any previous year, that the end of the year is quickly approaching.

During our New Years Eve 38 EGD Party last year, one of our friends claimed 2007 to be his year. Yes, as the countdown approached, he repeatedly said that 2007 was going to be his year. This somewhat stunned the other guests, myself in particular.

We questioned his reasoning, and I am sure had sober heads been present, he may have rethought his stake to '07. We even suggested that he and I share '07, but he was determined. I will keep his reasons in confidence, but I will tell you this - his reasons did not involve medical issues, sudden and immediate alterations to life plans, or fiscal declines.

Now I realize, that in no obvious way, did I win in '07. If you examine all of the tangible evidence, this has not been my year. So I am starting my "Claim for '08" right now.

2008 is my year (and Jason's too)!

If I hear of anyone else trying to claim '08 as their own - said individual and I will have words.

'08 Emily '08 *

*can I trademark that?

I'm sorry

It seems that I have let down some loyal Bits Readers. And if you think that I am referring to just you, don't worry, it is more than just you. But I am posting today...just for you!

I have been doing pretty good lately. Ladyfingers and Dude (my dad) are here for a visit. Ladyfingers, when not rummaging through my potted plants, helps me with my beaded jewelry "enterprise". Dude, prefers to come to Winnipeg with a task in mind...so he is helping Jason and my father-in-law build a room in our basement. We live in a three year old house, with a basement that is just screaming out for some greater purpose other than a massive dumping ground (and storage for my design magazine collection)

So I have been supervising the "migrant workers", and not thinking much about the pending results of liver biopsies and the far reaching effects of such results.

I have had some developments along the medical frontier (I refer to it as a frontier in my situation, and not just a front, because it appears to be vast, scary, and unknown). Nothing has changed, however I received a repeat performance of encouragement, provided by my original neurologist:

"Emily, the issues that you are experiencing are not surprising to me. What is surprising to us is that you aren't experiencing more issues given the assault on your brain."

"Emily, you have just as much right, if not more, to be sitting in that (MS Clinic) waiting room than the people who are there."

"Absolutely, you should try to see the new MS doctor...I can't change people."

"Keep taking the lorazapam since it works. You won't develop a dependency on it because there is a physiological need for it. And besides, it takes a certain type of person to develop a dependency, and it isn't you."

And my favourite part of the conversation...I asked him if it's possible, that I am feeling a sense of small improvements everyday, I notice things are better than they would have been a month ago...is this possible?

"Absolutely. It could be years, but you will continue to feel improvements, as your brain does small bits of repair."

Rolling along with a re-newed sense of strength and optimism,

Emily

the waiting game

And now we wait. I had my liver biopsy this past Thursday. A doctor, guided by an ultrasound machine and his fingers, removed a teensy-tiny piece of my liver. The piece was removed via a needle, and a petite hole that he made in my body with a pre-poke, and the needle itself.

In retrospect, I suppose the experience was kind of cool. The liver is first examined by an ultrasound technician, and then the doctor comes in to "mark the spot". The location of choice for this doctor was in between my ribs.

If you have never had an ultrasound performed before, let me say that they aren't as comfortable as they appear in Hollywood. The hand-held portion is twisted around, angled, pushed, and twistedpushedangled all at the same time. And then the doctor kept jamming and digging his fingers into my ribs.

"Your ribs are a bit strange over here", he said.
"Oh, I broke four of them a while ago", I responded.
"And how did you do that!?", asked the technician.
"Tobogganing", I squelched.
"Ohhhhhh", they said in unison.

So the doctor finds the prime area of liver, and makes a "dent" to mark the spot. An injection of freezing is then put in to the area, including the liver capsule. After following a couple of breathing instructions, I heard a loud pop, felt a tug inside, and that was it.

And now we wait.

We wait for the results of the biopsy. We wait for the MS Clinic to receive word from the Hepatologist regarding the pending relationship between my liver and the proposed MS therapy. We wait for a prescription to arrive in the mail.

I'm waiting, but I think that I already know the answer.

Emily

Monopoly - Here and Now

So have you seen the new Monopoly game? It is being advertised on television and it is also in the stores (including Shoppers Drug Mart...go figure).

If you haven't, it isn't what you would imagine, by Monopoly standards anyway. It isn't the World Edition, or the Celebrity Incarceration Edition, or even the Grey's Anatomy Edition! The new edition is "CASHLESS"!

No, you don't get Boardwalk just by being the first to land on it. It is cashless because there isn't any paper money in the game! Each player can keep track of their cash using a plastic card, in a plastic electronic machine that looks like a pin pad machine! Transactions are made using this machine, instead of exchanging the colourful money. From the commercial, I could clearly see that Visa is in on this "reality" game.

Now lets talk about what this means...

Monopoly first came out about 72 years ago - why tinker with perfection - it's a classic.

I learned to make change with that game...how will this generation learn to count?

What happens to the banker? I never wanted to play, I just wanted to dole out the pretty money!

What about Free Parking?

And...most importantly, when I do decide to play, how can I cheat?!

Did I say that?

Emily

I was wondering how many licensed versions of Monopoly there actually are, but I couldn't find an exact number. Here is a list of some that I bet you didn't know existed (American Only):

U.S. Space Program
Red Sox Edition
My Fantasy Baseball Edition
Peanuts Collector's Edition
My American Idol Edition
U.S. Army Edition
Michael Graves Design Edition
Inflatable Edition
John Deere Collector's Edition
Best Buy Corp. Edition

...and until the latest Here and Now Canadian Edition, there has only been one Canadian Edition, released in 1982

the dentist

woohoo! I just returned from the dentist - he's a doctor, right? I only ever get good news from him! Even when I claimed to have been lazy regarding my oral hygiene habits, he said that he only had to do, "a bit of tidying up". I never leave much work for him. Funny though, I still fear going to the dentist. I have never had a filling...and twice a year I get all worked up about maybe having one.

Did dentists want to be dentists when they were kids? This came to my mind when the hygienist was polishing my choppers - do hygienists have a dream of being a hygienist? Could I be a hygienist, now? Or did I need to feel that at some point?

Do dentists and hygienists have a dream of freeing the world from plaque, and stopping the destruction of gingivitis? What is their motivation? Do they have a thing for shiny teeth like I have a thing for co-ordinating colours? What do dentists think of orthodontists?

Anyway, if your oral outcome is somewhere in your genes - I didn't get those genes passed on to me! I stomp on you, bad oral genes! (but I did get regular dental check-ups courtesy of mom and dad).

Also, I swear by Crest brand toothpaste, and a basic toothbrush. And don't tell my dentist, but I only floss a couple of times a month, and I rinse even less.

SMILE!

Emily

here it is...

I am thankful that I live in Canada (Vive le Canada!)

I am thankful for my family: the lessons, the adventures, the genes (yes, even the genes!), the challenges, and the role they played and play in making me "ME"

I am thankful for friends who came, saw, and stuck it out (and still do!) in my most difficult times.

I am thankful for laughter.

I am thankful for choices: the freedom to choose and the options set out and still to be discovered.

I am thankful for generosity: of time, of energy, of spirit, of money, of self.

I am thankful for Cleo and Nike: who make me smile when I can't think of things to be thankful for, and no one else is around...for the memories, the personalities, the trust and unconditional love

I am thankful for canned stew, for without it, I would not have Jason for myself, let alone to share with you

Emily

Ok - some of you were going to have Jason no matter what - so I am also thankful for sharing and his genes too (yes, even the genes!)

blood collection

I forgot to mention that I went for my blood tests this morning!

When I received the requisitions yesterday, it was shortly after 3 pm, and too late to get to the hospital lab across the street from the doctors office. So the attentive nurse said to me, "Well you live in Transcona, so why don't you just go to a lab out there tomorrow...these is no sense in coming all the way out here, as long as they send the results to the right place, and that you do it as soon as possible."

I quickly scanned the requisitions, and noticed that it was all typed, and checked off - no hand written instructions to confuse the lab tech. This shouldn't be a problem, I thought.

So I got up earlier than usual today, and drove to the nearest lab (which is in my GP's office, and I know the tech...kind of).

Here's how it went:

Me (smile on face, reqs in hand): Hello! Are you able to do these tests here (holding out the papers)?

Tech (half smile of face): Probably. Let me have a look (taking the papers from me).

Tech (reading the first page): Complete blood count? (flipping to next page) Smooth muscle test? (flipping to next page) (flipping to next page) I don't know what some of these are. I have the basic tubes here (running her hands over the empty tubes, with multi-coloured tops, that were sitting on her desk)...if you want to get stuck twice, I can do the ones on this sheet (pointing at the last sheet), but you will have to go elsewhere for the other tests.

Me (nodding my head): oh, ok. (reaching for the papers)

Tech: I mean, I would love to (motioning to the clean looking office, as if to say she has nothing else to do), but I don't know what to do with blood. It needs special containers...

Anyway - you get the point.

So I walked back to my car, and phoned Jason. Jason recommended that I drive to the HSC (not Concordia Hospital) because they were still closer than the other hospital, and would know what to do.

On my way to the HSC, I phoned C. at work and asked her if she was busy. I was being pre-emptive - having a driver just in case things went awry in my brain. I knew that we would have to walk a bit to the lab, sometimes I walk by the lab, and we would have to walk through some crowds....all things that can throw my perception off. Luckily, C. was available, and she drove me to the HSC.

So here is the second conversation:

Me: Hello.

Tech: Hi. Please wash your hands (motioning to the anti-bacterial pump on the desk). I'll be right with you.

Me: (one pump....lots of goo...glopped on the floor) Whoa. I got a lot.

Tech: Let me wipe that up (coming around the desk with a tissue). Ok, what do we have here...(reaching for my paperwork). Oh, hold on a minute (turning around in her chair). Ladies...we need to have a discussion! (walking away from the desk, with my papers, followed by two other techs)

Me: (eyebrows raised, eyes wide, thinking to myself...you have got to be kidding me. It's a good thing that I'm not fasting!)

Tech: A complete blood count?
Other Tech: that's just a CBC.

Me: that's on another paper...

Other Tech: see, it says the will do a (blah blah blah) if they need to.

Ok - I'm going to cut this short. They worked it out. There was nothing on there that they couldn't do. And in their opinion, there was nothing on there that the other tech couldn't do either...she just didn't want to.

Tech taking my blood: So you had to drive all the way here just for this? Are you here for anything else?

Me: Nope. Just this.

First Tech: That's ridiculous. You be sure to tell your doctor about this. Where did you go again? All she needed to do was make a phone call.

What can't anything be simple for me?

Emily

Only 50 in Canada!

Yesterday did not go as I had envisioned. I had an appointment with a hepatologist (liver specialist) to review the results of the blood work and ultrasound that I had done in the spring. The need to review these tests resurfaced, because I need/want to start my next MS therapy as soon as possible.

As per Health Canada, no MS patient can begin beta interferon treatment without prior liver testing. I expected to hear that I have a fatty liver, and that the regular monthly testing of my liver enzymes while on the beta interferon would be acceptable.

Instead, I was told that I do have some fat in my liver, however the concern for me starting on an interferon is because of something else. While testing in 5 areas concerning the liver, I showed no readings in 4 areas, but I did show low counts in the fifth area. The fifth area represents the possibility of a disease called autoimmune hepatitis. In order to know for sure, I am having an ultrasound guided liver biopsy next week, as well as more blood tests.

This time, it didn't take months for me to have the urge to scream and cry, and pound out my frustrations, fears, and disbelief. It only took about an hour, but I was in public, so it didn't happen.

So what about the doctor who ordered these tests back in the spring, you may be wondering. I wasn't wondering about him until early this morning. I mean, I won't assume that he necessarily dropped the ball himself, maybe he passed on files to another doctor. But from what I learned yesterday, the doctor didn't leave Manitoba until the end of September. And...there are only about 50 hepatologists in Canada. I guess it's a good things that my MS doctor follows the rules set out by Health Canada, and insisted on a second look at my tests. In case I didn't mention this before, neither my MS doctor nor my family doctor received reports from the original hepatologist. I didn't see him for a follow-up appointment either.

Well the new hepatologist seems keen to help me, and efficiently too! He asked me when we need to start my treatments, and I said, "This month". So he said that he would make that possible...I watched and heard him make the appointment for the biopsy next week! Nice guy! Let's focus on him, instead of the negligent and delinquent person who filed me away earlier.

Taking deep breaths in...

Emily

my conversation

I thought that I would share my thoughts from today with you.

I was driving down a familiar route, on my way to Kitchen Designs by Decor (my work). I was sailing along - a few kilometers over the speed limit, with the radio on.

I (as I'm sure you do too) was having a conversation with myself in my head. I don't know how the conversation started (thank goodness I know who started it!), but I found myself saying, "I am thankful that I can do this". What I was thankful for, was that I could drive myself, and I was driving myself to my place of employment.

I'm not one to consciously find myself thankful for things.

So on my way home, a few hours later, I started to think of all the things that I was thankful for. I tried to think of things out of the ordinary - I mean, if I'm going to start thinking this way, my style is usually to be different.

I'm still working on my list.

Thankful for you,

Emily

an attempt

On Friday afternoon, I organized my own "Bolster Emily's Spirit" evening. An evening of laughing, consuming good drinks and eats, and just hanging out.

Unfortunately, not all who were invited felt the need to come. But those who did come, did a wonderful job. It's too bad that we can't spend every day together.





Corina has been working out at the gym!

Ok - so here is the best story of the evening:

The four of us, Jason, Corina, Jason and I were playing Password...the Milton Bradley Game where you give your partner one word clues in order to get him/her to say another word. Minimal candy, and modest amounts of alcohol had been consumed at this point. My-Jason and Corina were partners - and they were trailing....way behind. Corina was set to give the first one word clue of a new round.

Corina: (settling into her seat, linking eyes with My-Jason) crawfish.

My-Jason: (Corina had barely finished the "sh" sound) STUCK !

My-Jason: (smacking his head with his hand) OOHHHHHHHH!

Corina, Emily, Jason, My-Jason: (hysterical laughter errupts)

My-Jason: Well aren't I supposed to say the first thing that comes to mind...like that sticks in my craw?!

I couldn't stop laughing - and I'm still laughing now as I share it with you.

Emily


***The featured artist in this post is Corina.

an old story, but it has come back to haunt me

I still feel as if I am walking under a cloud. Something just isn't right. I'm tired of this. I'm tired of doctors and tests and getting no answers. I'm tired of organizing and tracking my own healthcare.

I had a liver specialist order tests in the spring. I completed the tests, and then he left the province without sending any reports to any of my doctors! Even better - he didn't even write the reports! This non-existent report is holding me up from starting anotherMS medication.

I remember the morning when I had the blood test done. It was a fasting test, and I was told that I could go to any of the clinics on the list that he gave me. So Jason and I drove to a lab that is right here in Transcona. Well the technician at this lab would not take any blood because she couldn't read all of the tests that were required (which affects how much blood to take, and what to do with the blood once it is drawn). She was pretty snippy with me, especially when she couldn't get the doctor or his office on the phone. So needless to say, she sent us to the nearest hospital lab to have them draw my blood.

The hospital lab wasn't familiar with the group of tests either. But at least they put more effort into finding out what was required of them. The technician used her computer, and made several phone calls. In the end, she successfully squeezed 6 viles of blood from me. I don't want to have to repeat this blood collection.

I'm just tired - mentally, physically, emotionally. Tired.

Emily

my response to the comment on my Halloween post

ROFLMAO!!!



(rolling on the floor laughing my ass off!!!)

Jason and I were at Zellers today and decided to have a look at the reduced candy. Upon close examination of the remnants, we didn't get anything that contained Mars bars. Despite being peanut free...there wasn't an attraction to them. And I wasn't sure if I have ever had one - therefore I didn't know if I would like them.

Emily

Happy Halloween!

I was laying in bed last night, thinking of Halloween memories...

I can remember dressing up as a bunny. Prior to going out trick-or-treating, I was hoping along, as all bunnies do, when I smacked into a night table beside my parents bed! Blood came pouring out from below my quivering bottom lip. I still have a scar.

I also remember dressing up as Princess Diana, with Andrea as the Queen, and my neighbour Mark, as Prince Charles. It was just after Prince William was born, so I carried around a doll wrapped in a blanket. William got so heavy in my arms, that I ended up carrying him in the treat bag instead!

During our trick-or-treating years, we lived in a HUGE subdivision. It also seems as if more people were home back in those days, waiting to "shell out", compared to now. We had to do the neighbourhood in two parts - stopping at home at the halfway mark to empty our loot bags because they were too heavy!

When we finished for the night, we would come home and examine our piles of loot on the living room floor. Mom and Dad would always have a peek, and grab a few treats for themselves. This past summer, my mom told me what her favourite chocolate bars are. They certainly weren't a kind that I have ever tried myself. I quickly realized (and maybe she did too) that I have never tried them because they never stayed in my Halloween loot pile for longer than a minute!

I'm pretty sure that Andrea scammed me out of some candy too - I sure hope that my spirit protects 2Penny's loot this year!

Halloween Apples!

Emily

Oh yes, and if Scooby-Doo comes to my door this year, I promise not to call him Snoopy!

flashing my hand

I've had a rough week - week and a bit. But you know all about that stuff - ill mannered medical professionals, missing medical tests and files, and the usual tears and frustrations.

It may seem to you, the reader, that this is my life. Well it certainly occupies a great part of my days/week/months. I have said from the beginning that I will not let MS be me - that I will be me with MS. However, in this blog I have only touched on the medical aspects of my diagnosis. Obviously, the affect is greater than just terrible trips to the doctor.

Next week, I hope to start (again) a gradual return to work. I have not blogged much about work because I try not to focus on work, or think about work. I realized back in the summer that I needed to return to work in my home life before my work life. Well, that seems to be working itself out, and next week, hopefully my work life will start up again.

Then maybe I will be able to get my mind off the other area in my life, and Jason's, that has been wickedly intertwined with my diagnosis. Jason and I spoke about this last night, and whether or not I should include this aspect of our life in my blog and we decided that to not include it, it would be against my purpose of this blog.

***deep breath in***

Prior to my initial neurological attack, Jason and I had been trying to start a family for three years. We had finally given up, and decided to look for answers through a fertility specialist. Our initial appointment was in August of 2006, about two months after my attack began. A few months later, we were told that it would be difficult for us to conceive a baby without the assistance of fertility drugs and some other drugs to correct my egg dispersal system. It turns out that I don't like to share my eggs - I prefer to keep them in my basket(s).

***I still chuckle at that last bit, so you can too***

Anyway - in January I had to make a choice: start treatment for MS, which had me out of commission at that point for eight months; or start a fertility program. We chose to start the MS therapy. That was a terrible time.

As you know, I am currently off of my MS therapy, awaiting a go-ahead on another drug. It is recommended that any persons trying to conceive should be off of their MS therapy for a minimum of three months. BUT - we are in no place to begin trying to conceive. I'm not working, I have a number of odd, unexplained issues, I haven't worked in 16 months, and there are many things to consider.

There is the knowledge that pregnant and nursing mothers seem to get a reprise of their MS symptoms. There is the possibility of having multiple births. There is the possibility that we could try for months, and still not get pregnant. There is the possibility that I could one day have limited mobility and then I would question my parental abilities to have fun (would you believe that a social worker said this to us?) There is the possibility that we could conceive quickly, and I never experience mobility issues.

So, Jason and I continue to play the cards that we have been dealt. Unfortunately, the Book of Hoyle does not contain the rules for this game!

Emily

3 rights

I have always just assumed, that if the time were to come that I would have to take someone out - you know what I mean...scrap...drop the gloves...put up your dukes...float like a butterfly, sting like a bee...that I would lead with my left.

Three quick lefts, and then a power shot with my right.

Wrong.

I learned on Monday, that I am in fact faster with hand-eye coordination on my left side! I took out a peg-hole test faster with my left hand than my right hand, not once, but twice!

So in fact, three quick rights, and then a power shot with my left is best.

Good to know.

Emily

Emily's Rick Mercer style RANT!!!

How does the expression go...when cooler heads prevail?

Yes, well...I'm still justified in my books.

I had a breakdown yesterday evening - I let it all out with tears and screams. It appears to have worked well. I remember screaming when I was indirectly told that I had MS - that was nothing compared to yesterday.

It came to me because I realized that the "treatment" I am receiving is cold, impersonal, robotic, and scripted. When the nurse took my list from me, instead of saying things like, "rise above this", and "you just have to accept it", she could have said, "Would you like to tell me a little more about the circumstances in which you are in when you have trouble remembering someone's name? Do you find that you have more difficulty with your memory when you are tired? A number of patients have issues such as these, and they find it improves if they have a good night's sleep."

Now while that may seem just as scripted, it is more personal, empathetic, and informative. I don't need a life coach, or a rant. I need someone in the medical profession to ease my fears and address my concerns.

And then there is the doctor - the man of no conversation, just instructions: follow my finger, push my arms, touch your nose. I understand that he has a job to do, and by giving me those instructions, he is checking things. So why not end with, "Looks good", or "a little weaker on the right, but still within normal range". How about speaking to me about the drug that I took for seven and a half months and stopped.

Now wait a minute, maybe I should be more fair, and not sum up the whole visit with him into a list of instructions. He did ask me how long I have had the head/balance issues. And he is sending me to a different specialist to make sure that it isn't anything else...because as he says, it isn't my MS.

Yes, that's right. I saw this doctor in April for this head issue. He ordered an MRI, and never saw me again until yesterday. I have been uncomfortable for a long time. And, damn it, I had these same problems over a year ago!

My CNS was attacked...by lesions...lots of 'em...a whole herd of wild lesions wreaked havoc on me...eating away at the fatty substance called myelin that protects the nerves in my CNS...a herd of lesions that were concluded to be the workings of the unpredictable and sneaky disease called MS.

I feel like a donkey that has been corralled in with the horses - when in fact I am a horse - with a horn coming out of my head. I'm still a horse, just a bit different.

Emily

Today - as of right now

I really don't know what to say about my appointment today. I left feeling extremely angry. The kind of anger and frustration that rises inside and you just want to scream and pound on something to get it all out.

As I expected, I did very well with all of the neurological and co-ordination/strength tests. I could tap my toes, touch my nose with my fingers, and push the doctor away. I don't have to endure any MRI's in the next while. The doctor was willing to speak with me about Tsyrabi as a therapy option if I had insurance that would cover it - but I don't. So it looks as if I will be starting a beta-interferon in the next month or so.

The reason why I left angry is that there are still unanswered questions - and as such, there are no new ways to assist me in getting through my periods of, "can't I just replace this head on my shoulders?". I feel mis-understood. I was told once again, to rise above these stumbling blocks as it's too early in the disease to be taken down by it. I was expecting to be asked if I was having any challenges, any difficulties, and new issues, and concerns. As suggested, I made a list of things to talk about, and answers to questions that I anticipated so that I would not forget anything. Well the nurse saw that I had a list, and took it from me. She started to read it, and that's when she began her "rising" speech. I wasn't given the opportunity to speak about my points. No one asked me how many relapses I have had in the past 8 1/2 months.

The doctor does acknowledge that I have a problem - but he does not believe that it is related to my MS. The symptoms that I describe, as well as his hands-on testing of making me sit up and lay down on the cot in the exam room tell him that something is off - and it sounds like it is vestibular in nature. no kidding. He is sending me to an ENT (ear, nose and throat doctor) to eliminate any inner ear problems.

Myself, I am quite happy with the explanations that I have received regarding my motion issues. Just don't tell me that it has nothing to do with my MS. My problems are a result of lesions - lesions caused by MS. Just because I don't fit the script...

I just seem to be continuing on in this void - an unknown world - the Winnipeg Triangle. I understand that I likely have life-long impediment's...I just want to know why, and what is the best treatment. I want one disease.

Emily

no need for DNA testing

Ok - let's discuss something other than MS. I will be doing enough of that later today when I write down all of my questions and concerns for my appointment tomorrow.

I am happy to hear that my spirit is currently embodied by my youngest niece - 2penny (Rebeccah). What a blessing for her family! Independence, creativity, cute-as-a-button looks, sincerity...and we are both Leo's being tormented by Virgo's! Now unfortunately for her, this means that she is also misunderstood, taunted, and punished for behaviours that she: a) had no part in ; or b) she was loured into by her older sister.

Now when Rebeccah is no longer a 2penny, when she is closer to 3tens, the truth will be revealed to all. Crimes of old, when the punishment has been served, and the statutes of limitations have been lifted, will have new evidence, and individuals who bared witness will come forward. In some cases, the original perpetrator will speak out in an attempt to cleanse her soul.

The result will be the vindication of 2penny!

Now how 2penny's own spirit merges with mine over time will be interesting to witness. Let's face it, she has the DNA of not 1, but 2 parents who are both older siblings...and most importantly, she has the DNA of her mother...independence, creative, cute-as-a-button-looks, sincerity...

A proud Auntie Em!

how I'm feeling

I have some time on my hands (my fav tv show doesn't come on for another 15 minutes, and Jason is watching the Bomber game) so I thought that I would come back today with one more post.

I have been feeling a bit strange lately. Emotionally...or maybe just mentally. I don't really know the word for it. I am frustrated by my limitations, and I don't feel productive in my life. I am getting very antsy for something to happen.

I have started the ball rolling to return to work - AGAIN. Last week I met with my rehab consultant, and he then met with my employer. Our plan is to return me to my job as I left it, with a few minor changes. As well, I would slowly build up my clients. I am nervous and scared about this. The initiation to return to work is once again my own.

I wouldn't say that I am bored at home, because there are alot of things that I would love to be doing, but I either don't have the energy to, or can't do certain tasks for long periods of time without getting dizzy. I have hobbies that I love to do, like creating beaded jewlery, and I can't always do that because the mere act of concentrating can send me for a ride on the tea cups!

A balance seems to be missing...I'm just a body, floating around my house. Maybe that means that my spirit is missing...

It's time for me to help find the person who disappeared without a trace...hey, maybe they could find my spirit!

Emily

big day coming up

This coming Monday, October 22, is my six month (but really 8 months) follow up with my MS doctor. I'm nervous.

I'm sure that sounds strange to you. I fully expect to pass all of the neurological tests that involve my reflexes and motor skills, and mostly pass the tests involving balance. I think that the original purpose of the appointment was to check in on how the medication was working.

What is making me nervous is my ability to convey my "hidden" problems to the doctor. Well, it may not be so much my ability to convey, but more so the doctors' ability to understand me in my descriptions, and believe what I am saying...and assist me in dealing with these problems.

I first met this doctor in January. I was referred to him by another neurologist...the referral was somewhat of a, "we're giving you the final say on this one", with a touch of, "we have no clue what to do with these test results". It was this doctor's job to decide if I have MS, and to tell me so.

I remember him asking me if I have had any new symptoms that lasted more than 24 hours, and I know that I started to answer him, and he lost his patience with me saying that I was confusing, and everyone was confused and that was why he was seeing me. He then said that the things the other neurologists had said weren't important, were important, and therefore, I do have MS. He then passed me a sheet of paper, told me to pick a drug, and come back when I had done so.

Let's leave out the next bit, and move on to our second encounter.

I then saw him again this past March. I had been in contact with the MS clinic because I had this ferocious bobble-head going on....for sometime. My head felt as if it was constantly moving. So an appointment was made for me to see the MS Pharmacist, who after spouting that it is his job to be ethical and helpful, walked out of the room on me, muttering that I wasn't describing vertigo. About five minutes later, he returned to the room with the doctor. After some tests and questions, he said that he could think of no lesions that would be causing my symptoms, and maybe they had missed something on previous MRIs. In the meantime, the pharmacist was asking my husband if my head ever shakes like someone with Parkinson's Disease.

An MRI was performed, and I never heard anything more from the doctor. But what else happened in the days immediately following this second visit is the grand finale. I was desperate for some relief. I think back now, and I don't know how I got through that period. I remember getting up in the middle of the night to feed Nike, sitting on a lawn chair in the basement while she ate, and my head felt as it was moving down, left, down, up, right, in, right, down, up...

I made phone calls to the MS Nurses, and left messages. I was told that if my issues were so troubling, that I should visit the emergency room, and wait and see a neurologist. Or maybe I should see a psychiatrist, because this could be all in my head. Well, I was so upset after that phone call, that I took .5 mg of Ativan to calm me down. Well, I don't know if it calmed me down, but it took away my bobble-head! And it did the next day too!

So I decided to make some adjustments to the nurses advice, and I phoned a neurologist instead. I explained both the situation and my remedy, and was met with, "Well of course Ativan works for you. It is a well documented vestibular suppressant. Anyone who is familiar with your file, would know that we are surprised that you don't have more problems like this". This is MY MS. The neurologist who only treats patients with MS, could not see my situation as something he had seen before, therefore, it could not be MS related.

How do I get the MS doctor to see that even though the pages appear to be upside down, it's still the same book that he reads everyday?

How do I get quality care?

How do I keep myself from saying that the level of care I have received in this MS Clinic is callous?

I just want my symptoms somewhat controlled, and a drug to slow the disease down that doesn't make me cry for seven months. Then I can get on with things.

Emily

I have done some more research into the group behind the recommendation that the provincial governments not fund Tsyrabi. Here are some important points:

1. The Canadian Expert Drug Advisory Committee is a panel of individuals within the Canadian Agency For Drugs and Technologies in Health

2. The CADTH is owned by and reports directly to the 13 provincial/territorial Deputy Ministers of Health and the Federal Deputy Minister of Health

3. The original objective of the Canadian Drug review is to provide the provinces/territories with equal access in both a timely manner and identical information

4. The provinces/territories do not have to follow the recommendations of the committee, however, they do follow the recommendations more than 90% of the time, creating more consistent coverage across Canada

5. The CDR looks at the clinical and cost effectiveness of a drug compared to alternate therapies, and reviews if the drug provides good value to the system and improves health outcomes.

Now, the points that I think are important may not necessarily be the points that you think are important, so be sure to check this out on your own. All of this information is taken from this website:

http://www.cadth.ca/index.php/en/cdr

Last night I was trying to understand why the recommendation would come out to not fund Tsyrabi. I could understand if it was a horse of a different colour, or even a horse of a different breed - but I don't believe that it's a horse at all!

There are five Health Canada Approved drug therapies for the treatment of Relapsing-Remitting Multiple Sclerosis: 3 beta-interferons, 1 glatiramer, and 1 selective adhesion molecule inhibitor. Of the three interferons, there are two 1-a's and one 1-b.

Simply put, the interferons and the adhesion molecule inhibitor prevent inflammatory T-Cells from entering the central nervous system. While their purpose is similar, what they are made of (and from) and how they do their job is different. The glatiramer alters the make-up of the T-Cell, but still allows it to enter the CNS.

So they all work differently. The expected results of the interferons and the glatiramer is a 30%-35% reduction in the frequency of relapses and the severity of relapses. The expected results of the selective adhesion molecule inhibitor is greater than 50%.

***Ok, so I seem to be doing alot of rattling here...when in fact, if given the option, I am not sure if I would take the drug in question. I do, however, feel that should my neurologist and I decide that it is the best treatment for me, than I would hope that my provincial drug coverage would assist me in providing myself with what is best for my long term health and wellness. I would prefer to have their help now, so that I may not need it later.***

I'm not a doctor...I just play one in my own life,

Emily

my comments on your comments

If you have made a comment, check back in the comment area where you left it - I may have responded to you there. Unless I have alot to say, in which case I will post a new thread.

a new list

As a follow-up to my post, "The Top Ten Reasons Why I Have MS" (from August 1), I thought that I would share with you:

"Why I Have MS and Jason Doesn't"

6. Jason makes more money than I do


5. Jason is more efficient on laundry day


4. Jason is more particular when it comes to folding the clean clothes


3. I have more experience with Fair and Carnival rides (moving floors, spinning buckets) making my ability to handle the exacerbations more fun


2. Jason never enjoys being the passenger in a car


and the number one reason why I have MS and Jason doesn't...

1. Jason is better at making me laugh at any given time than I am at making him laugh

Excuse me while I go and look for my Jason...

Emily

dangling carrots

Breaking news - in case you don't read the health section of your daily newspaper -

Provincal governments urged NOT to reimburse for promising new MS therapy!

http://www.winnipegfreepress.com/subscriber/health/story/4057859p-4662400c.html

I was made aware of this decision earlier this week while reading a free publication on MS that I receive in the mail (msdialogue is also available online at http://www.mswatch.ca/).

The article that I read provided a bit more information on the group behind the decision. The Canadian Expert Drug Advisory Committee (CDEAC) established the Common Drug Review (CDR) process in 2002. The CDEAC reports to the Canadian Agency for Drugs and Technologies in Health. The CDR assess the safety, effectiveness, and cost -effectiveness of new therapies compared with existing ones. The committee is comprised of physicians, pharmacologists, health economists and members of the public. Of the physicians on the committee, none are neurologists.

Here is a breakdown of what the various drugs cost per year:

$16 000 for glatiramer acetate (also known as Copaxone)
$18 000 - $22 000 for beta-interferons
$33 700 for natalizumab (also known as Tsyabri)

Some provinces MAY provide some reimbursement if a doctor submits a special request.

Ok - so what do I think of all this?

I am at the beginning of my journey, and I have already ruled out one treatment. What is the sense in having a list of effective drugs that aren't covered by the government? It isn't as if the patient goes to the pharmacy, buys the drug and then sends a bill to the government, demanding re-reimbursement.

A doctor must first prescribe the drug, and then an application is submitted to the provincial government for partial funding. Not every patient is going to be on Tsyabri - it isn't like buying candy. The doctor has to believe that it is the best treatment for that patient, and in some cases, it may be the last treatment to try. No drug will halt this disease in it's path - we only hope to slow the progression. How can that be denied?

Health Canada approved Tsyabri based on positive results from two clinical trials. "The largest study, the AFFIRM clinical trial, involved 942 people with relapsing-remitting MS and evaluated the effect of Tysabri on the rate of clinical relapses and the progression of disability. The study found Tysabri reduced the rate of clinical relapse by 68 percent compared to placebo and the risk of disability progression was reduced by 42 percent as a primary end point compared to placebo. It also had a statistically significant reduction in the number and size of active brain lesions identified on magnetic resonance imaging (MRI) scans. "*

Glatiramer Acetate and Beta-Interferons can reduce the rate of clinical relapse by about 30%.

Two tiered health care - dangling carrots for the wealthy.


Sigh,

Emily

*This was taken from the Multiple Sclerosis Society of Canada website. See the full article here:

http://www.mssociety.ca/en/research/DMT061004.htm

big baby steps

I have heard that the only reason people blog is for other people to read it. I have heard that blogging is a form of journaling. I have heard that blogging is for self-obsessed people who want everyone to know everything about them. Whatever.

I now feel the need to remind myself why I am blogging. I feel as if the last few posts have been solely about MS, and I have been feeling some self-imposed pressure to write about something else.

But wait a minute - I'm blogging so that I can better process the things that are happening in my life right now. I'm openly blogging about my experience with a disease that many people will admit to not knowing alot about. I'm blogging to maintain contact with my friends and family.

Ok, sounds good.

Today, I took a big baby step. Well, no, I took 2 big baby steps. Let me tell you about them...

Five weeks before I became ill, I joined a gym. I recall starting my work-outs with a bang, and they quickly fell off (especially when I stumbled off a step platform, and into a machine...no joke!). For now obvious reasons, I could not continue at the gym. A medical hold was placed on my file...and I re-joined today!

Jason has been pushing me for months to go back and come up with an exercise regimen that meets my needs...and more importantly, meets my strengths. I have been reluctant for many reasons, but I finally feel ready to start moving my muscles...re-introducing full movement back to all my limbs (is the neck a limb?). Jason wants me to get out of the house more often.

That was big baby step numero uno.

On may home from the gym, I stopped in at the grocery store. whoa. I had a small list of things to pick up - and purpose in my steps. I have been to the grocery store...zero times... by myself in the past 20 months. And I would just like to say that it was uneventful.

Cheers!

Emily

one week later

It has been a week since my last Copaxone injection. For as committed as I was (and Jason too) to doing that needle every day...we don't miss it at all.

There were no accidental openings of the fridge to remove the needle hours prior to injection.

There weren't any panicked cries of, "CRAP...we forgot the needle!"

There weren't any tears shed.

I am still working on getting my skin back in order: massaging out the tiny hard patches just under the skin, and massaging the achy spots in all six injection areas.

Another "medical mystery" was also solved this week. My hair has been falling out quite rapidly for the past five months. I didn't know what to attribute it to. I asked the Copaxone Support Nurse if loss of hair was ever reported as an issue for patients, and she said not of any significance.

My own diagnosis is that I was losing my hair as my body's response to trauma...because now, it has stopped.

Oh yes, one more thing...I had a dream yesterday that involved a yet to happen MRI. I don't know when the scan will be, but according to my dream...my brain will be LESION FREE!

WooHoo!

Emily

a dedication to my Fryer Family

Thanksgiving week-end...here it is again. I have been here in Winnipeg for six and a half years now, and I still miss my Fryer-family...our Fryer-traditions...even more on the holidays.

Since I came here, Fryer-traditions have obviously changed...so what could I really be missing?

First off, there is the addition of two mini Charette-Fryer's: Nickel and 2Penny. The great thing about them, is that they bring new things, but at the same time, they meld so well with the old.

Returning to the house that I grew up in, or my last old bedroom is no longer an option. But Grandma and Grandpa Fryer's good china, and Ladyfingers and D's good china is still around...and I remember that the most because we have to do the dishes by hand when we use them!

Turkey, mashed potatoes, gravy, a bun, and some veggies...I can get that just about anywhere. But I can't get it with the stress that is created at the same time as the food...preparation of a Fryer meal has always had a bit of tension...and the food isn't the same without it!

But the best part of a Fryer holiday week-end (other than the countless games of cards: Oh Hell, Conasta-does-anyone-know-where-moms'-card-holder-is?, Euchre), what I miss the most, is the people. A small gathering of the people who know you the best: people who know about your dreams, your struggles, and your achievements. Your inner-circle, your peeps, your rocks, your challengers, your "how are you?" and meaning its.

October 1977

Thank you for family.

Emily