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?