PPPS

The 17 18  songs I received from my friends for my music project. They will not be identified by song, but I'd like to thank Lesley, Sam, Sammy, Rogue, Shelley, Tracey J, Leigh, Renee, Hayley, Jason, Jamie, Jackie, Kate, Donna, Duane and two women named Jen. Listed alphabetically by artist as they appear in my iTunes playlist.

Dancing Queen - ABBA
Verlaine - Charles Trenet
Hurricane and Fire Survival Guide - Cloud Cult
I Wanna Drive the Zamboni - Daddies Gear
Point of View - DB Boulevard
1234 - Feist
I'm Yours - Jason Mraz
Doll-Dagga-Buzz-Buzz-Ziggity-Zag - Marilyn Manson
Bloody Mother F*****g A*****e - Martha Wainwright
Float On - Modest Mouse
Smack My Bitch Up/Where's Your Head At? - Prodigy V. Basement Jaxx
Lodestar - Sarah Harmer
Move Any Mountain - The Shamen
It's a Great Day to be Alive - Travis Tritt
Beautiful Day - U2
Linus & Lucy - Vince Gauraldi Trio (yeah, it's the Charlie Brown song!)
Illusion - VNV Nation
We're Going to be Friends - The White Stripes


Tomorrow I'll talk about the project and how it worked.
Edit:I forgot to add one from my iTunes to my playlist! Sorry person who gave it to me!

I remember her saying, "I'm already dead".

My experience with peer support groups was not based on me trying to deal with my symptoms, or what they mean or meant, or needing explanations of what ever ache and pain was about.

I was trying to find out how you deal with the real world when your body can and will stop working for you without notice.

I was trying to find out how you don't shut yourself down and shut yourself out of the real world.

I was trying to find out how you reclaim your life before diagnosis. I was trying to find out how you keep your old life as much as possible. I wanted to know how you deal with having your livelihood, your body, your mind and your senses stolen from you without losing your mind and sanity.

And the truth of the matter is... none of the people in these groups had answers. Or their answer was unacceptable to me.

Today I went outside for the first time in a long time all by myself. I walked 10 blocks from my house to the SkyTrain, took the SkyTrain to Waterfront, walked from Waterfront to my former workplace in Gastown, picked up my last paycheque and the stuff from my desk, walked back to Waterfront, went to the bank, went to the Shoppers Drug Mart at Broadway, grabbed a burger at A&W, and took the bus home in just less than 90 minutes.

My left leg started failing between the office and Waterfront, but the rest on the train made it better once I got to the bank. But for the most part, the outing was uneventful.

(Well, I got new mascara. That's eventful. It was on sale for $7 and we'll see how I feel about it later.)

Tomorrow I have an appointment with my social worker at the MS clinic. We've got some stuff to talk about then.

That brings me back around to the title of this post (which is a sample of Patricia Krenwinkle, a former Manson family member, used by White Zombie in the song Real Solution #9) and the original point of this post.

If not being able to get something that looks like and acts like who I used to be is the expected and tolerated outcome of MS, then I'm not sure I want to live.

Maybe I haven't allowed myself to fail enough yet, but I'm not drinking the MS support-group Flavor Aid just yet. I refuse to believe that the only friendships I'll be able to maintain are people who meet me after my diagnosis. I will not believe that Joe and I will be divorced by the end of 2011. I cannot accept that I won't be able to handle stress or dance again or wear heels or get brain and eyes back.

If I that's the way it HAS to be...

"I'm already dead."

Shootin'

I had to hold the pistol a lot further away than was physically comfortable, partly because the hot gas coming out of the cylinder kept fogging up my safety glasses but also because I was having a really difficult time getting my eyes focused. The sights had no defined, crisp edges at all, due to vision issues I'll explain later. I'm actually shocked that I did as well as I did.

I also learned that getting excited about good things makes my left leg act up. Apparently, having MS means that you can't get happy, angry or generally emotional without having some sort of physical effect that has the potential to screw up your day.

"Of all the preposterous assumptions of humanity, nothing exceeds the criticisms made of the habits of the poor by the well-housed, well-warmed, and well-fed." - Herman Melville

I heard this last night at the end of the syndicated episode of Criminal Minds on A&E, and it got me thinking about how I judge people by their experience of the world and how I have been judged by my experience of the world. I have a difficult time taking people seriously who haven't lived outside their comfort zone. I have a difficult time trusting people who've never done something illegal. I can't be close to someone who's never fucked their life up for a period of time.

I have also found the criticisms by people in the MS world to be less than helpful or constructive. When I say that I am really not sure that a life with MS is worth living, I get told that I'm miserable and negative and I'll never appreciate the joy that is found by getting outside in a scooter. When I say that I can't read, people automatically start telling me to get prism glasses to stop the double vision, without even considering that I don't have double vision.

I have cognitive impairments that prevent me from remembering the first paragraph I read. When I start the second paragraph, I can't make sense of it because I don't remember the first one. So I have to go back and re-read the first, etc. etc. I took me a week to read a single chapter of The God Delusion so I gave up. I've cut my Google Reader subscriptions back because I can't read 97 news/politics/commentary sites every day. Even with only 30 I find myself skimming, because my brain is just not geared for retention.

I obsessively go over these blog entries and still miss typos and errors I never would've missed before. I used to be really smart, but thanks to MS, I've caught "the dumb". I really can't decide what I am more terrified of; losing the ability to walk, to see or to think.

My second issue with reading has to do with my eyes themselves. I can't keep them focused without actually *thinking* about it. Even as I type this I have to keep forcing my eyes to stay in focus. The eye doctor at the MS clinic says that it's not anything they can really fix with glasses, I just have to keep exercising my lazy eye focusing muscles. When you spend a great deal of time just trying to keep edges on the world it makes your eyes tired and you get headaches. I have headaches almost every day. I eat 6 Tylenol every day just to deal with it.

People with MS who want to give peer support seem to be more than happy to jump at you with a solution to a problem, even if you don't have that problem. Whether its my vision or my mental state (which wasn't exactly great *before* I got MS) everyone has got an opinion on how I should behave or speak as a sick person. I'm trying to live up to my own expectations these days, so forgive me if I fail to live up to yours.

But going out shooting yesterday was good for me. I was out and standing for more than an hour, I wasn't completely exhausted (or even all that tired) when I got home, and I enjoyed myself and the hour of almost normal I was able to have.

I have until bedtime Monday night to complete my music project. If you are a friend of mine, interested in helping and have 10 or 15 minutes to spare, please comment, send me a message, an @reply or email.

That's a lot of different communication mediums, don't you think?

Update

I feel better than I did in December.

I have the feeling back in my baby fingers.

Another Day.

Another pitiful attempt at finding meaning and reason in my life.

I've discovered Fashion Wars on Facebook. If you're a vampire or a mobster, I'll trade you a place in your mob or clan in exchange for you joining my posse.

I've been invited to go to the range on Friday to take advantage of Friday Night Ladies Night where "ladies" shoot for just the cost of ammo.

Putting fifty rounds into a piece of paper is therapeutic.

Again, I have nothing to say.

PPS

My first 100 days are over.

I feel better than I did on the day I was diagnosed.

I've sat here since 1:02 AM trying to think of something else I could say about this, and I got nothin'.

That's as grateful and as positive as I can be.

Shame

Joe just said to me "I wanted to go for a walk with you today. It's beautiful out." and it felt like a punch in the gut and an elephant sat on my chest all at the same time.

A friend on Facebook pointed out that I seem to have a lot of time on my hands. That may be the understatement of the week.

I have a great deal of shame about not being able to work now that I've stopped feeling sick. ("Sick" is puking and/or pain. "Not well" is MS symptoms.) I'm still not well, and my future is too uncertain at this time for making plans, but man do I feel like shit about not being able to do much of anything.

I don't want to go outside of my house. I don't look good, I don't feel well, I have to use a cane in order to mitigate any balance or endurance problems I will most likely have, and my lack of abilities is really, really embarrassing.

If I don't have a new thing come back or an ability get stronger each and every day, I get disappointed and angry that I am not getting well. I am embarrassed that I can't do things and that leaving my house strikes fear into my heart.

I keep forcing myself to do whatever house work I can just to prove that I am still a living, capable human being. It doesn't work, but I can eat out of my bathroom sink.

Life is a constant trade-off, innit?

Due to other issues I've had over the years, I've learned to find other measurements of how I am doing other than my emotional state. I don't trust my feelings because they often lie to me. But by measuring how well I am taking care of my work life, my physical appearance, and the condition of my house, I can figure how much I'm caring about my life.

MS has taken away my meter sticks. I have no job. I am unable to fix my appearance. I have a difficult time completing tasks around my house. So all I have is my emotional state to guide me, and it's depressed, lost and without a rudder.

Joe asked me to wake him up from his nap to go for a walk with him. I've already put that off for 20 minutes so task avoidance shouldn't go on much longer. That's what shame does.

It cuts you off from the sun. I missed the sun because I couldn't go outside.

I am an Atheist

As part of OutCampaign.org's "I am an Atheist" campaign, Friday, March 20, 2009 is the first online "out" day for various non-religious/non-believers on Facebook. It's migrated to the blogosphere over the day and I'm pleased to be a part of it. In short:

"We rally for freedom of thought, the right to believe and not to.

We rally to erase the social stigma around nonbelief.

We rally in solidarity with those who live where freedom and equality for nonbelievers is only a dream.

We rally to tell the world: we are nonreligious, we are equal, respect us.

This is not a hate rally: we are against false beliefs, not those who believe in them. Intolerance will not be tolerated."

I didn't really take all of this too seriously until I saw Montel William's appearance on the Oprah show on Tuesday and had been evangelized to via email. And now my dander is up and my ass is chapped.

First off, MS is not a gift that has given my life meaning. I was not "given" MS so I would return to serving my lord and saviour. As a non-believer, I question whether there is an actual meaning or reason for existence at all. If there is a "greater meaning" it needs to happen in this life, now, rather than in some fantasy place after this life is over or in some future life where I try and work out the problems of this one.

To say that a disease is a lesson is to fudge the truth. Yes, there are problems in the environment, in the food systems and with lifestyle choices, but to act as though MS or cancer or HIV or whatever is divine retribution for the abuse of the planet or (more often) for the abuse of one's body is as bad as holding out an $85 a week colon cleanse as the solution to someone's problems. Or a vitamin, diet or exercise program as a cure-all to viruses and disease. Jesus/God/Higher Power are just as futile and false hope as any of the whack-job "cures" I've been offered over the past 40-ish days.

I know that in some circles, quoting Karl Marx is a conversation ender but here it is.

Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

Marx, K. 1976. Introduction to A Contribution to the Critique of Hegel’s Philosophy of Right. Collected Works, v. 3. New York.

Offering me religious redemption is as offensive to me as offering me platitudes or junk science to treat my disease.

I've been accused of being miserable and not wanting help. That is simply not true. I want help I can use. I have no problem with having to adapt my life to my disease, but telling me that babies, disability pensions and volunteer work are "fulfilling" and meaningful is a slap in the face. That may be *your* life; it's great that you can find some contentment in that, but that is not what I want for *my* life.

I am an Atheist. It's funny that the Holy Roman Catholic and Apostolic Church, the 12-Step movement and neo-paganism helped me get there, because I'm fairly certain that wasn't their intent. I am also very against peer-support as a result of my attempts to deal with sexual assault, drinking and drugs, mental illness and quitting smoking. With my experiments in trying to find someone who isn't completely Pollyanna about MS and a fully functioning person with a life not defined by MS, I'm convinced more than ever that peer support is how you keep the sick, sick.

In summary, if you've got some useful and practical suggestions about how I can retain my sense of self, keep at least some of the things I love in my life, and how I can get and stay well, then I'd appreciate your peer support. I'm not getting any better. My condition has not changed since my first post about the improvements. I need useful solutions in order to deal with this.

But if all you've got is "you gotta change", "your life as you knew it is over, suck it up princess", and/or "pray ta Jeesus", you aren't my peer.

As a side note, I'm working on a project with the MS clinic's social worker to find something to be inspired by. Since personal stories don't really do it for me, I've decided to find inspiration in music. I've asked my friends who've expressed an interest in helping me to send me a single mp3 of a song that inspires them. Since last night I have collected four songs. As a result of this project I am now using my iPod as a defence mechanism. Here's the song of the day:

No way of knowing if she's ever coming back
No way of knowing if I care or not
No way of knowing if she's right or if she's wrong
No way of knowing if I'll carry on
And I'm alive
And I'm alone
And I've never wanted to be either of those

Alive Alone - The Chemical Brothers - Exit Planet Dust

"I haven't been afraid of dying since I was 16...

With MS, for me it's the living part that puts me on my knees."

Woman's post on the internet

(From a cool forum site that did not originate the spam.)

What if I'm simply not interested in having a new "normal" life?

A life that doesn't include anything that I like, love, am interested in, or am good at doesn't seem like a life worth living.

I can't read a book for more than 15 minutes. I can't walk if my temperature reaches 99 degrees, so I can't exercise. I can't do my job because I can't work more than forty-five minutes without a rest. I can't remember what happened to me last week. I talk about BC when I'm telling a story about something that happened in New Brunswick.

My hair and skin are a mess. I can't wear any of my old clothes or shoes. I can't watch a movie on a large screen because it causes double vision. I can't stand in one place long enough to enjoy an art exhibit. I can't have more than one glass of wine in an 8 hour period. My husband and I might as well be roommates who give each other hugs, pecks on the mouth and pep talks.

MS has stolen EVERYTHING that I love and is important to me. It's stolen every dream and aspiration I had for the future. This is my new reality. I don't think, act or look anything like I did 6 months ago. I don't know the person I see in the mirror, and I want her gone.

I used to be fabulous. Now I'm not. What do I have to do to get the old me back?

Based on most accounts, there's nothing I can do. This is it. This is "me, with MS". I don't want to settle into a disability pension and a "fulfilling" volunteer job. I don't want to have kids and build a family. I can't and won't find meaning in serving the lord.

Everyday I look at job postings to see what's out there these days, and I realize that even if I improve I won't be able to do anything that I am actually qualified for and experienced with.

Where and with what does that leave me?

I fear a disability pension and a "fulfilling" volunteer job.

My Kingdom for an $85 Cure!

As I mentioned before, I spent some time online with the MS "Truthers".

As a result of this, I have this crazy woman in Connecticut sending me her scientific thesis summaries about what causes and "cures" MS. She didn't write cures. She wrote "cures", because to hold out her formulations as a cure would be fraud and the FDA could move to have her shut down. But if she writes "cures", to mean "I live symptom free", it's perfectly legal.

She sent me information on her mail order business. She wants me to purchase her "cure" because in 5 days I will be "cured" if I do it.

So I read what her cure was.

$85 a week for a colon cleanse. $85 a week for a colon cleanse program that will only "guarantee" results if I do it for 52 weeks. In a row. At the same day and time of the week, every week.

THIS is how desperate this disease makes you, and if this woman had any sort of science and documentation to back her up *I* would probably try it. I would do just about anything, short of human sacrifice, to not have to deal with this. I would just like to get better, find some sort of maintenance program which gives me my life back and then forget all about having this disease.

But this science is coming from a woman who is a PhD candidate at a fine arts academy, which was the obvious next step after completing her MFA in Creative Writing.

Good "science" is often the product of Fine Arts education.

PS

Eighteen months ago today I quit smoking.

18 months ago the only symptom I had of MS was numb finger tips. This numbness in my fingertips went away when I quit smoking the previous time in 2001. The numbness in my fingers is why I quit smoking the last time, and when it didn't go away after 9 months I contacted my doctor to do some investigation.

9 months ago I thought I had a B12 deficiency. 8 months ago I was pretty sure that I had MS but wouldn't say it. I kept googling for diseases more interesting and curable.

I often feel like I was swindled out of all the benefits of quitting smoking. I've never been more unwell in my life than I have been since I quit.

But hey, life's not fair.

Judging

I try really hard not to judge days, feelings, emotions, activities and practices as "good" or "bad".

Today is a day where I am really struggling with that. All the gains I've made in the past two weeks have been erased over the past two days. I'm using my cane again. I'm both sleepless and fatigued. Cognitive difficulties mean that this is going to be a short post.

It's probably just because I'm now in the crashing immune system phase of the mito treatments.

I had my first emotional outburst yesterday in quite some time which was almost immediately followed by my left knee giving out and my vision blurring.

I was running on five hours sleep, and by hour ten of my day other abilities started collapsing. Yet I couldn't fall asleep because the dreams of falling on the pavement and smashing my teeth are back.

Today, all the stuff I lost yesterday hasn't come back. It's not any worse I don't think, but it's not here. I want to do a load of laundry, but I know I can't do it by myself and Joe's up to his eyeballs in school work. To ask him to help around the house seems selfish, because it's not like what he's got to do is a 40 hour a week job. He's writing papers, reading, programming and web developing. I'm staring at the internet almost every waking hour of the day because I so desperately don't want to be alone.

I'm an extrovert who doesn't like or trust many people. I don't have many friends and the friends that I do have either don't live in Vancouver or have their own personal soap operas to deal with. If it were not for Facebook, the only person I would talk to each day is Joe. Maybe Simon a couple times a week. But yeah, this is it.

This is my life.

I only realized a day or two ago that someone I know saw me like this. I am horrified that those friends saw me, my house and my life in such shambles. If I had been in my right mind I wouldn't have had them here.

I was thinking that this weekend would signal the start of me reclaiming my life but it's obvious that's not going to happen because I can't walk. I'll be lucky if I make it to this evening having been able to make it in and out of a shower. I have clean sheets that will just have to wait until I get better to be put on the bed.

It feels like I've stacked 80% of my old life on a chair; for use after something called "better" happens.

Maybe I can donate that old, unused life to the Sally Ann. I'm sure they can find someone who could benefit from it.

The First Ninety Days

Three months ago something that I had been suspecting, but hoping for something else, happened.

It wasn't a shock or a surprise. I have Google. I know how to put symptoms into the search and come up with possible diagnoses. Multiple sclerosis came up way more often than anything else. I knew for weeks that it wasn't cancer or a tumor. I was fairly sure that is was MS, but after watching a few too many episodes of House I secretly hoped for something more exotic and curable. I knew. I just wouldn't or couldn't say it because it's not curable. I've never had anything before that couldn't be cured.

I don't deal well with this fact. I have an ongoing issue with having the will to live, and I won't lie to you... I often wish that I was terminal. After a couple of decades of involvement with the mental health systems, I know that there's a difference between not having the will to live and being suicidal. I am not suicidal. I just find life really difficult at the best of times, and now that it's the worst of times, I'm not sure what the point is.

However, three interesting things have happened over the past 90 days that have changed my world view from "Life is not worth living" to "Well, lets give this living thing a whirl."

Trust me... Vast. Improvement.

1) I made my first introductions to internet discussion groups about MS. I lasted about two weeks. I was inundated with emails from people who had great "research" findings that claimed that if I went on a gluten, ovo-lacto, legume, sugar, and meat free diet, had a colon cleanse, smoked pounds and pounds of organically grown marijuana, AND have the government investigate the viral loads of the drinking water, I would never suffer from another symptom of MS. I am to avoid every MS drug approved by the FDA because they're poison and I will die 30 years sooner. I am to transfer every marital asset into my name because Joe *is* going to leave me before the end of 2010. (99.999999999999% of ALL husbands leave within two years after diagnosis.)

It's like MS has it's own "Truther" movement.

Tin foil hats look terrible on me and dealing with people with levels of negativity that make ME look like Mary Poppins, so I bounced. I am fairly tolerant of other people's crazy, but I can't deal with conspiracy theorists. There was also a huge movement to get government to approve the use of low doses of pretty heavy-duty pain killers in the "treatment" of MS. I'm not sure how that works, but it's not my bag.


2) My doctor made a great case for a course of mitoxantrone while leaving the ultimate decision to me. I was sitting there in his office in January thinking, "If it's this bad after less than a year, how bad is it going to be if I do nothing." I'd read some about the other treatments and diets and changes and realized that I would probably get much worse until those things started working.

The first treatment went really, really badly until about two weeks later. One day, I just woke up feeling better. Then, quite at random, things started working again. Not all the time, but they would work. I had my second treatment a week ago and nothing bad happened. My improvements kept building and building until Tuesday of this week. I went to get a cinnamon bun from the corner store (about a half a block away) and I was halfway there when I realized that I was walking without a cane. Yesterday I did it again.

Last night I was walking normally. I don't walk normally all the time, but I'm up to about 80 or 90% of the time. When I stand up, I don't have to physically correct my stance to keep my balance. That happened every time I stood up yesterday and today.

This treatment is really working, and I can see measurable results that tell me that I am going to get better. Two or three months ago that wasn't obvious to me.

and finally,

3)This blog was found by Lisa Emrich and she was kind enough to add me to the MS Blogroll she runs.

This allowed me to access the real stories of real people who aren't devastated by this disease on a daily basis in a way that the online discussion groups just didn't. I'm no beacon of hope and will never advocate for the rectal use of sunshine, but it's just really, really good to see people who are just getting up and doing it.

As I was writing my previous entry, all of a sudden I had the lyrics of Matthew Good Band's Strange Days [You Tube] going through my head. Specifically the last verse.

We're done lying for a living
The strange days have come
and you're gone
You're gone

Either dead or dying
Either dead or trying
to go

Good morning
Don't cop out

And today that previous entry was featured in that Carnival of MS Bloggers #31. The Carnival is "a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis."

With that, I am going to rename the title of my blog.

Either dead or trying...

Fast Fun Facts about MS

Two out of three people with MS are women.

Your odds of getting MS increase by four times just by virtue of being born north of the 40th parallel. Canada has one of the highest rates of MS in the world.

According to 2007 research, only 24% of people with MS are wheelchair bound, and usually 15 to 20 years past diagnosis.

I have been told that finding comfort in the statistics about my condition is a tad odd, but I do.

As most people don't get MS, I've already beaten the odds. So, the likelihood that I will get the worst and most severe forms of the disease are even less. I'm also really fortunate that I'm under 40, living in a country with socialized medicine and great amounts of research dollars, in a province with Pharmacare, in a city with one of the best MS clinics in North America, and can survive on federal income supports until I can find a new job later this year. I shudder to think what our lives would be like if we were living in the US with Joe full time in school and me getting forced out of a job with no insurance benefits.

Seriously, think about that. Our lives would completely suck in so many ways I haven't even been able to fully imagine how much that would suck.

Don't get me wrong, my life is sucking pretty hard right now, but I think that we've plumbed the depths of that suckage. Unless something goes radically wrong before June I think we've seen the worst of the disease for the next five years or more.

I am fortunate to be diagnosed in 2008. If I were diagnosed even in the year 2000 I would not have the opportunity to get the drug I am currently on. I've been reading some phase 3 drug trial information and there should be oral medications that work better than the injection drugs we have now available mass market before I turn 40. There's a lot of holistic research being done in BC regarding exercise, fatigue relief, cannabis, nutrition and the like. In May I find out if I can be considered for some of those research projects.

I've decided that if they can't find a cure in my lifetime I want to be a part of trying to find one for the next generation. I want a cure, and barring that I want a treatment that's like the insulin for MS. I want to be able to manage this, and I guess that's going to be a process.

The social worker at the MS clinic gave me a nutrition article telling me to eat lots of antioxidants, omega 3 fatty acids and drink a glass of syrah, cabernet sauvignon or pinot noir a day.

As someone who loves bright fruit and berries, sushi and avocados, and red wine... eating for my health is going to be a real pain in the butt. ;)

I'm not really good at looking on the bright side of things, but I'm pretty good in a crisis. I'm not interested in becoming a motivational speaker or lying to people about what I'm really going through. I've always said that I am a realist not an optimist. I'm not supremely confident in my ability to want to live. That's the biggest one. I'm trying, but finding the will to live and actually do something with my life seems unlikely.

I'm not noble and things less than MS have destroyed my life to the point where no matter what I do my life will never recover. I have been brought to my knees by things far less than this disease and spent years in the abyss of depression, self-destruction and poverty.

Many people told me that the first year after diagnosis is really difficult but once you find your "new normal" you learn to deal better. That's probably true.

A year can change so many things.

Forward motion

Joe and I went to Ms. Lina's art show closing this afternoon. We had a glass of wine, learned about methodologies and mediation, and then went and had a burger and fries at the greasy spoon down the block from our house.

I walked from 12th Ave to the equivalent of 19th Ave. That's 7 blocks. I walked them and my leg didn't go floppy. It went floppy shortly after arriving home, but it didn't stop working while I was outside of the house.

I've had no further side effects of the treatment. Every day since my treatment I've woken up with more energy and more or longer lasting abilities.

If I can't find something worthwhile to do with the rest of my life, it may just be all a waste of time. I've got to use these physical gains while I've got them, because goodness only knows how long it will last. The nature of MS is one of uncertainty; a level of uncertainty we all have but don't have to acknowledge. Tomorrow I might not be able to walk, or talk, or see. It's not likely, but it is not outside the realm of possibility. Tomorrow you might be hit by a bus. Again, not likely, but not impossible. Having MS just seems to make me more conscious of making plans based on what I can do today, while always having to remember not to plan the results because I might not be able to complete those plans tomorrow.

I've been thinking about the future, and trying to figure out in what direction I want to direct my energies. I need to consider what I need to be fulfilled along with the ability to take this new direction and earn an income on either side of the Canada/US border. I think that I'm putting together some ideas in my head.

If the personal is political and vice versa, then there are a couple of ways I can put what I am interested in to good use. I believe very strongly in health education, as in physical, sexual and mental health. I also believe very strongly that governments and communities play a big role in influencing the public.

There's got to be a way to combine public health with public service. There's got to be some way of making health a political issue.

Yet I think that these are just the musings of a cognitively impaired mind.

I'm pretty sure that no one other than me is interested in this shit.

Pretty Good

Today was an incredibly surprising day.

I had a really crappy night. Pounding heart, uncomfortable muscles with twitches, a tension headache across the brow, and major anxiety.

I woke up this morning and my legs worked. My body didn't ache. I didn't have a headache, nausea or feel like vomiting. The pressure behind my left eye was gone and the continuing blood-shot look of that eye continues to decrease. I felt *good*.

I didn't feel back to normal, or like I did a year ago, but I felt good. I felt like maybe I was making some progress. Like maybe things really could be different in a couple of months. Last night was the first case of side effects of the solumedrol steroid treatments. Five doses and then I get side effects. Great.

Speaking of side effects, the reaction I had the first time to this treatment likely wasn't caused by the treatment, but the fact that I had a slight case of double vision that was causing vertigo. My EEG showed some crazy stuff going on with my ocular nerve before the treatment, and it took over two weeks for the treatment to shut it down. So, 17 days of puking was caused by my eye. How about that?

It's weird, I have felt so crappy for so long to have a day like today (a day I've been dreading for more than a couple of weeks) is really inspiring. I can't shake the feeling in the back of my head that it's all going to fall apart again, but today was good.

In about 15 hours I will be past my period of cytotoxicity and will be able to kiss and drool on my husband again. I am going to try a new remedy to ease my dry, flaking, screwed up skin tomorrow, and try to get back into my routine of vitamins and supplements to make up for the fact that I really, really can't cook.

I wore makeup to the hospital yesterday. It's the first time I've worn makeup in months. That's a big deal, but it felt really good to actually give a shit about my appearance.

The thing that freaked me out the most yesterday was that I couldn't remember being there a month ago. I mean, I know I went, I know that my friend Rina took me there and met me at the nurse's station to pick me up, but I couldn't remember where I went in the hospital, I didn't remember the nurse, or the room, or anything. The nurse remembered everything about me, including what kind of hat I wore the last time. She remembered my husband's name, even though he wasn't even there the last time. It was weird. I was incredibly upset that I couldn't remember anything about my first treatment other than the guy who was in the next bed was kind of a jerk.

Ahhhh, cognitive difficulties. Or trauma. Who knows really?

I have a difficult time being patient with myself, I have a lot of things that I have to work out financially and career-wise. I wish I was capable of drinking more wine with friends and being able to fall asleep at midnight or getting up before 1 PM.

About getting up before 1 PM, my mum is telling my grandma I have MS tomorrow. So, I have to be up at 9:15 AM to suck back enough coffee to be coherent enough to talk to my grandma. She's a little emotional, loves her grandkids, and has a blood pressure issue. I don't want her to have a stroke over this, so there's a ledge she will need to be talked down off of.

I hope mum has a lot of tissues. This is going to be a tear-jerker for her.

Projections

Tomorrow is my second of six mitoxantrone treatments.

Mitoxantrone is a chemotherapy drug that is cardio and cyto toxic. If I take too much or for too long it could damage my heart. I also have to make sure that no one is exposed to my bodily fluids for 48 hours after I am dosed.

It's delivered with an IV steroid and an anti-nausea drug. It takes about two and a half hours to get all that into my system.

I receive about 1/4 of the dose someone with cancer would get, and it still makes me ill if I don't monitor my intake of anti-nausea drugs. It was really difficult to make sure I got the dosing right the last time with only 12 hour Gravol (that only lasted 8 hours) to deal with it, so I think that the MS clinic and I have decided that I will get a prescription grade anti-nausea drug this time.

yay...

I seem to have spent much of this day trying not to be terrified of the next two weeks. The side effects of my first treatment were so freakin' awful that it's difficult for me to just stay in this day, where I'm not sick and actually feeling like I am starting to gain the long term benefits of this treatment.

MS is an auto-immune disorder. For some reason my immune system thinks that myelin (the fatty insulation coating around the nerve endings) is the enemy and must die. When your nerve endings get demyelinated you start getting scrambled or dropped signals. In the simplest terms, my brain regularly gets "404 - Page not found" errors. The idea behind getting chemotherapy is that it will stop my immune system from eating my brain fat.

Everyday I don't have feeling in my finger tips and toes and I have fatigue. Most days I have uncoordination on my left side, pain in my joints, pressure behind my eyes, a loss of focus in my vision when I get tired, and general cognitive shortages. I have a difficult time sitting down to read, as I forget the paragraph I just finished, so the next one doesn't make sense. I've asked Joe for a knife when I meant scissors. That sort of thing.

As someone who prided herself on remembering every postal code and phone number she's ever had, having these kinds of deficits are frustrating to the point of anger. I feel like I'm not smart anymore. I can't go to work anymore. I can't dance anymore. I can't wear high heels anymore. My skin and hair are a mess from the chemo, so I don't look pretty anymore. Because I'm such a mess I don't go out anymore, except to go to the doctor.

It's like I've lost most of my identity to this disease. Everything I loved about being me is gone except for Joe, my friends, my family and my apartment.

My internet friend David was nice enough to buy me a book from my Amazon.ca wishlist called MS and Your Feelings by Allison Shadday.

In it she gives a list of signs that you've come to accept your diagnosis and disease. The first one is:

MS is no longer the focus of your life.

At 82 days, this seems impossible. I can make it to the corner store on my own and that's an accomplishment! The idea that MS will no longer be the focus of my life is so unrealistic at this point it seems almost otherworldly.

I'm not saying it's impossible. I'm just saying that it's difficult to believe.

The name of this blog.

12 December 2008 was the day that my life was changed forever.

That's the day I was told that all the strange things that my body had been slowly and steadily doing, making my life increasingly difficult had a reason.

Eighty days ago I felt my dreams for my future collapse and my hopes for my life as a woman, a spouse and a member society were gone.

Two months and 18 days ago, I was watching my body do things I couldn't understand. I was being disabled slowly, over a progression of days, not weeks, and the doctors that I talked to seemed to have very little in the way of answers.

There is no long term prognosis. There is no way of knowing if any of the treatment options offered to me will work. There is all manner of best guesses, statistical averages, choices being left to me because no one wants to take responsibility for something not working. I also cannot fail to mention the dozens of people who are this diseases' version of the "9/11" truthers. I have all the emails. Trust me.

My name is Lori. I'm 34 years old. I am the first (and hopefully only) wife of Joe. We're childfree. I had a job until the end of 2008, but that's gone now. In April I will start looking for a new one. I'm the oldest daughter of Kaye and Kevin. The oldest sister of Julie, Tracey and Steve. I'm the granddaughter of Helen and Evelyn. I'm the daughter-in-law of Linda and Jack. I'm the sister-law of Jeff and Lauren. I'm the aunt of Zack, Tyler and Alanna.

I have had the symptoms of my newly diagnosed disease since May of 2008. I have been told that I have a particularly "aggressive" course of disease.

I have Relapsing Remitting Multiple Sclerosis with residual deficits.

I used to care about a lot of things, but now I'm not so sure if any of those things matter. This blog came as an idea I had in the shower the night before last.

Maybe living out loud will help me find what matters to me and I'll find my reason for getting well.