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