Symptom Log: Day 17

So. Freakin'. Exhausted. I fell asleep before 11 PM last night, woke up at 9:30 AM.

I can now barely keep my eyes open. This happened yesterday around this time, and I spent from 8:30 PM until whenever I fell asleep dozing in and out of consciousness.

My social worker cancelled our appointment today. The MS Society's newly diagnosed workshop has been postponed until further notice.

I've gotta go. This is making it worse.

Symptom Log: Day 15

• Footdrop (Foot drags along floor during walking)
  
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
  
• Sleeping Disorders
  
• Inappropriately cold body parts

The footdrop continues to drive me f'in crazy. That's the symptom that bothers me the most when it happens outside my house. It bothers me because I know that people judge others' mental capabilities by what their physical capabilities are. I will tolerate a lot of judgments by other people, but I would rather die than people think I'm mentally impaired.

The symptom that bothers me the most is the confusion that stems from my cognitive problems. It has really effected my realationship with Joe because he thinks I'm just being difficult and trying to start an argument and I'm just trying to figure out what's going on and where he's going or what he is doing.

The symptom that will be the end of my marriage is the sexual disfunction. This is worse than when I was on depo-provera. That drug, I am convinced, prevents pregnancy by ensuring that you have no desire to engage in sexual activity. MS, I am convinced, is a cruel universal joke that prevents people from having any enjoyment out of life that doesn't require vast amounts of street drugs.

The symptom that terrifies me the most is the one that hasn't happened yet. What if I wake up tomorrow and I'm blind? What if I wake up tomorrow and I can't walk, or my left side is completely paralized, or I can't feel my face, or all of the nerves in my chest and back are screaming in pain, or etc. etc. etc? The uncertainty is what is killing me. I can't commit. I can't make plans beyond 6 hours from now. I can't get excited about the future.

Now that I am 1/2 the way through this project I wonder if I even care anymore.

I have a couple of really well meaning friends who tell me to live in today and be positive and happy now and I have a couple of really well meaning friends who have sent me links to research findings and tell me that tomorrow is another day and I will rise up, embrace and accept the cure that will come.

To me both of those ideas are as absurd and unlikely as George W. Bush leaving Laura to get married in Iowa to Dick Cheney. They are mutually exclusive. There is no hope for today if all I've got to live for is something that might or might not happen 20 to 30 years from now. There's no point in wishing for a better tomorrow if I can somehow manage to lower my expectations for today and accept what I've got where I am.

Wednesday brings another round of "Are we expending the right amount of resources on Ms. K?" with the MS clinic social worker, with a drop in by the nurse, the PT coordinator and the pharmacologist. 

If there is a bigger waste of time than dealing with MS in a way that "they" want you to deal with it, I have yet to find it.

Symptom Log: Day 13

• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Sleeping Disorders
  
• Inappropriately cold body parts

You'll notice that this list is shorter. The footdrop, neuralgia and ataxia have been gone for the past two days.

I refuse to get hopeful about this, because as I've reported... it could all be different tomorrow.

A Digression

This is my husband, Joe.

Today is his birthday.

If it weren't for him, I would be dead. If I had been on my own when I was diagnosed I would've killed myself, because I wouldn't have been able to survive alone. That's a lot of pressure to put on another human being.

I certainly wouldn't want to be the reason someone is still alive. Though, he's been a super hero before. He gave his mom a kidney just a month before he moved to Canada and just two months before he married me. All he needs is a cape and some tights.

For someone who's as pessimistic as he is, he's been positive and reassuring in so many ways. I fight him so much on his points sometimes I'm convinced that I don't deserve his love and support.

Sure, he's learned to tune out my incessant nattering on about subjects he has no interest in. He can barely contain the urge to yell at me when I'm confused and it's frustrating him. But he does.

He has been there for me in thousands of little and big ways over the past 3.5 years and I can only hope that I haven't been the biggest mistake he's ever made. I try every day to live up to his example.

He's not perfect, but he's the best thing that ever happened to me.

Happy Birthday, Joey. You mean more to me than I could ever hope to explain.

I love you.

Symptom Log: Day 11

• Footdrop (Foot drags along floor during walking)
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)
  
• Ataxia (Loss of coordination)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
• Sleeping Disorders
• Inappropriately cold body parts

Footdrop is back and it managed to take my entire left side with it this afternoon. I was trying desperately to get home as quickly as I could because I just can't stand to have anyone see me when I physically start to droop. I can't even be failing around Joe, because he doesn't need this shit.

I am trying desperately to get physically better so that I can start looking for a job in May, but every day it feels like one step forward, 18 to 20 steps back. I've called gyms looking for trainers because I can't do exercise by myself. I've called yoga studios in the neighbourhood and they won't help me because they don't understand my illness. One woman said that MS is just blockages in my chakras. She won't allow me to be physically coddled, because they don't support people not working out their karma.

Fucking dirty hippies. Why, East Van, why?

I am so emotionally and physically wrung out I can't do any more. I'm literally hunched over my keyboard like I'm melting.

This shit is bullshit. I give up. I just give the fuck up.

Symptom Log: Day 9

• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Intention tremor (Shaking when performing fine movements)
• Ataxia (Loss of coordination)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
• Sleeping Disorders
• Inappropriately cold body parts

The footdrop is gone again, the neuraligia went away later in the day after my last posting and has not returned, and generally my ataxia (loss of coordination) isn't happening with the same frequency or severity, but is still present.

I was going to go downtown to the Chapters to buy a book that can be found there, but I've been devastated by another loss. I have nothing to wear. I wear pajamas and yoga pants. Nothing else I own fits.

Along with having to accept that my body doesn't work, I also have to accept that I am a fat girl. Nothing can change this. I am a fat girl. I am 5'6" and I weigh 155 lbs, and I am a fat girl.

Before someone comes along and starts chatting about fat acceptance and self-esteem and the unattainable norms of western beauty culture, yad-da, yad-da, yad-da... I don't care.  That's not the point.

It's like this. I wake up every day not recognizing myself. My body doesn't feel the same and it doesn't look the same. It hasn't felt like my own body since last summer. My hair and skin are a mess. My brain is a mess.

Having my physical capabilities stolen from me is devastating enough, but also having my self-image ripped away just adds insult to that injury.

This is just more frustrating because I started calling gyms about personal training. Every gym I called won't work with me because of my disablity. They suggested that I get my doctor to refer me to someone.

I don't know how to lose weight without exercise. I am pretty sure it's not possible. But when the most physical you've been able to get in the past three months is 5 YOGA poses in 15 minutes, I don't think that weight loss is going to be timely or even likely.

Symptom Log: Day 7

• Footdrop (Foot drags along floor during walking)
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)
  
• Ataxia (Loss of coordination)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
• Sleeping Disorders
• Inappropriately cold body parts

The footdrop came back yesterday. Early, early this morning I was woken up by a new symptom:

Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)

My skin was crazy itchy and I kept getting these shooting pains in my joints, face, fingers and wrists. Often it would happen on both sides at the same time (Like both wrists at the same time) but more often than not it was just random shooting pain. It's still happening right now, with particular focus on my left breast.

In other news...

I have never wanted to smoke as badly as I do right now. I quit smoking over 18 months ago and have never really had the kind of smokers rage that I am experiencing now. I know it's not a physical craving. I know it's my conscious brain telling me that self-destructive behaviour feels good in the short term.

(SEE! All those years of cognitive behavioural therapy fucking worked, muthafuckahs.)

So all I need to do now is smoke a pack and a half a day, get shitfaced drunk, do some ecstacy, and sleep with a random stranger (or Finn) and I will have successfully reclaimed my crazyness and will have an excuse to give up on myself. Except that I am so incredibly unattractive, uncoordinated and tired that none of this is going to happen even if I put all the effort I could into it. The guy I married doesn't look at me with anything more than pity and angst, so destroying my life isn't going to happen tonight. 

(Again, I remind you how those years of CBT have worked. This is called "insight into my condition".)

On Monday, May 25, 2009 I have to be "ready, willing & able" to work or the Employment Insurance runs out and I am incomeless. This date haunts my mind because given the way I feel right now, that's an unlikely scenario. 

My immune system is supposedly in full crash, but I somehow managed to not catch Joe's plague by compulsive hand washing, not sleeping in the same bed with him, and not kissing anything but the top of his head for a week. OR the chemo doesn't actually work and there's nothing wrong with my immune system.

I have done five yoga poses each day since my friend Richard taught them to me on Thursday. (It was Thursday, right?)  I don't think it's helping, but it's not harming. Unless it's the yoga that caused my footdrop to come back and started the neuralgia.  *shrugs* I guess it's not worth thinking about.

Gawddammit, I want to smoke.

Symptom Log: Day 5

• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Ataxia (Loss of coordination)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
• Sleeping Disorders
• Inappropriately cold body parts

I haven't had foot drop in two days, so I consider it not to be a current symptom. I did wake up with a runny nose, dry, sore throat and a 99 degree temperature. Since I am undergoing chemotherapy if I get a 100 degree temperature I am to go directly to Emerg.

Do not pass go. Do not stop to think about it, just go directly to the hospital.

Symptom Log: Day 3

• Footdrop (Foot drags along floor during walking)
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Ataxia (Loss of coordination)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
• Sleeping Disorders
• Inappropriately cold body parts

That's it. Pretty much stable from the other day.

Joe's got a cold and I am undergoing chemotherapy so we sit feet apart and only touch knees. 

I'm freezing all the time and it bugs me.

Symptom Log: Day 1

Things I have are in bold.

Visual Symptoms

Symptom & Description

• Optic Neuritis  (Blurred vision, eye pain, loss of colour vision, blindness)
  
• Diplopia  (Double Vision)
  
• Nystagmus  (Jerky Eye Movements)
  
• Ocular Dysmetria   (Constant under- or overshooting eye movements)
  
• Internuclear Ophthalmoplegia (Lack of coordination between the two eyes, nystagmus, diplopia)
  
• Movement and sound phosphenes  (Flashing lights when moving eyes or in response to a sudden noise)
  
• Afferent Pupillary Defect (Abnormal pupil responses)
  

Motor Symptoms
Symptom & Description

• Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis (Muscle weakness - partial or mild paralysis)
  
• Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia  (Total or near total loss of muscle strength)
  
• Spasticity (Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs)
  
• Dysarthria (Slurred speech and related speech problems)
  
• Muscle Atrophy (Wasting of muscles due to lack of use)
  
• Spasms, Cramps (Involuntary contraction of muscles)
  
• Hypotonia, Clonus (Problems with posture)
  
• Myoclonus, Myokymia (Jerking and twitching muscles, Tics)
  
• Restless Leg Syndrome (Involuntary Leg Movements, especially bothersome at night)
  
• Footdrop (Foot drags along floor during walking)
  
• Dysfunctional Reflexes (MSRs, Babinski's, Hoffman's, Chaddock's)
  

Sensory Symptoms
Symptom & Description

• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
  
• Anaesthesia (Complete numbness/loss of sensation)
  
• Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)
  
• L'Hermitte's (Electric shocks and buzzing sensations when moving head)
  
• Proprioceptive Dysfunction (Loss of awareness of location of body parts)
  
• Trigeminal Neuralgia (Facial pain)
  

Coordination and Balance Symptoms
Symptom & Description

• Ataxia (Loss of coordination)
  
• Intention tremor (Shaking when performing fine movements)
  
• Dysmetria (Constant under- or overshooting limb movements)
  
• Vestibular Ataxia (Abnormal balance function in the inner ear)
  
• Vertigo Nausea (Vomitting/sensitivity to travel sickness from vestibular ataxia)
  
• Speech Ataxia (Problems coordinating speech, stuttering)
  
• Dystonia (Slow limb position feedback)
  
• Dysdiadochokinesia (Loss of ability to produce rapidly alternating movements, for example to move to a rhythm)
  

Bowel, Bladder and Sexual Symptoms
Symptom & Description

• Frequent Micturation (Urinary urgency and incontinence)
  
• Flaccid Bladder (Urinary hesitancy and retention)
  
• Erectile Dysfunction (Male and female impotence)
  
• Anorgasmy (Inability to achieve orgasm)
  
• Retrograde ejaculation (Ejaculating into the bladder)
  
• Frigidity (Inability to become sexually aroused)
  
• Constipation (Infrequent or irregular bowel movements)
  
• Fecal Urgency (Bowel urgency)
  
• Fecal Incontinence (Bowel incontinence)

Cognitive Symptoms

Symptom & Description

• Depression 
  
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
  
• Dementia 
  
• Mood swings, emotional lability, euphoria
  
• Bipolar syndrome 
  
• Anxiety 
  
• Aphasia, Dysphasia (Impairments to speech comprehension and production)
  

Other Symptoms
Symptom & Description

• Fatigue 
  
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
  
• Gastroesophageal Reflux Acid reflux
  
• Impaired sense of taste and smell
  
• Epileptic seizures
  
• Swallowing problems
  
• Respiratory problems
  
• Sleeping Disorders 
  
• Inappropriately cold body parts
  
• Autonomic nervous system problems
  

This is what I live with every single day. If the chemo works I will have less of these, or I'll have all of them but less often. Or nothing will change. Or something won't happen that could've happened. No one knows. There is no other prognosis other than "In a year it'll be different."

I can't get a third of what I want done in a day done. I feel like my brain is wasting away to nothing and soon I will be drooling on myself in a corner in an adult diaper.

I'm just tired of living like this, and it's only just begun.

There's more to this than what I'm saying

Just so you think I'm not making this shit up.

So what we (probably) have here is:

Reactive or Situational Depression: My life sucks.

Organic Depression: My brain sucks.

Medication Side Effect: I am on chemotherapy drugs that are doing some crazy shit to my ovaries. I am on and off steroids. No wonder I'm fucking crazy. My hormones are not stable AND my life and brain suck.

My former therapist won't see me because there's no behaviour we can modify until we know it's situational, not organic, or I come off the medication.

I have to see the psychiatrist that specializes in dealing with people with MS. Since there are only two of them in the entire city, I have to wait until June.

Getting sick has taken away all my mental health measurements. I can't fake sane anymore, even after 6-plus years of being able to do it.

"These changes ain't changing me..."

I am a firm believer that situations, relationships, and circumstances don't complete someone or make people into brand new people.

I think that they make people more of what they already are. They amplify what is already there.

I was never a happy person. I could have a good time, I could be personable and even warm and loving, but I've never been one of those people who sees the good in everyone or takes joy in the small things in life. I find life tedious, often joyless, and spend a great deal of time and energy just trying to get to the end of my life having endured as little pain and discomfort as possible.

MS has amplified this. MS has created for me a bullhorn in order to shout from the rooftops that there is no meaning, not much hope, and no real point to human existence but biological imperative.

The people I know, even the people who's JOB it is is to deal with people like me, don't want to hear me say, "I hate my life, every single minute of every single day." The best they can offer me is meds and a psychiatrist to monitor them. The only words of hope they've got for me is, "Things will be different in July." or "We'll know more in a year."

They can't tell me what different is going to be. They don't know what they'll know in a year.

"I hate my life, every single minute of every single day."

Whenever I get openly hopeful about something that starts working better or start talking positively about what I might be able to do come July or next year, in the back of my head I know that I'm acting like a "hugger" at the Special Olympics. It's solely for the benefit of the person I'm talking to. It's to make them feel better about my life and give them praise for saying or doing the right thing.

Because even if you earn gold at the Special Olympics, you're still disabled. That's the sum total of pretty much everything you will accomplish. And people clap because it's the only thing you're ever going to do that will get you public applause.

I won't lie to you about how I am feeling. But in a couple of weeks if you get the feeling that I'm not really there or present, it's probably because I don't care. I've been dealing with MS for less than 140 days, and I'm already tired of doing it.

At least with medication I can make both of us feel better.

"You could plan a pretty picnic, but you can't predict the weather."

Mackin' the Mito - Cytotoxicity Round Three!

Headache, tachycardia,(my new word of the DAY!) depression, left leg drop, anxiety... blah, blah, blah.

It would've been nice to know, oh, two months ago that my inflammatory response was so difficult to control that it will take me at best six months just to recover from that, let alone start seeing any real improvement toward my pre-symptom life.

Really, that could've been mentioned at ANY point before or after 3 February, Dr. R or J, RN. Jumpin' Jeebus on a pogo stick, that would've been AWESOME.

(There needs to be a "winky face" for *eyeroll*)

Plan of attack:

See family doctor before cardiologist.

See social worker before seeing the psychiatrist.

See cardiologist/Get MUGA scan (it's a MOVIE of your HEART pumpin' using OLD SKULE technology. It's very cool. I think I should own an MPEG of it. And a scrollable CD ROM of my last two MRIs. But I digress...)

See psychiatrist before seeing Dr. R to get some symptom relief.

See Dr. R for follow up on cardiology, chemo and symptom management.

If all this checks out I'm back for Round Four! in early July. I hope that I can do it in either two weeks before my birthday, or wait until after my birthday.

I'm averaging a level and a half each day in Mafia Wars and I'm up to level 53 with 116 mafia family members.

I need to surround myself in funny and hide from the world for a couple of days.

Kevin Smith or Seth Rogen? Both?

The steroids that I get with the chemo drugs are kicking my ass again, so I think I'll be going to bed *before* Jon Stewart tonight. I'll watch him online tomorrow. I'll try to send Joe down to the vid store to get me some luscious-comedic-man-with-tenuous-ties-to-Vancouver-made movies.

Things are not going the way I was hoping they would go. Things are things that I need to take a couple days hiding out from.

The title of this post is from the song "Ms. Jackson" by Outkast. (I prefer BOB, but this line was fitting.) I've been listening to Johnny Cash remixes and covers for days. If you've got any on mp3, gimme a shout out.

I'll close with this song that's NOT by Johnny Cash, but seems to fit with what he used to sing about and what I'm going through.

When there's nowhere else to run
Is there room for one more son?
One more son...
If you can hold on
If you can hold on,
hold on.

I wanna stand up, I wanna let it go
You know, you know - no, you don't, you don't.

I wanna shine on in the hearts of men
I want a meaning from the back of my broken hand.

Another head aches, another heart breaks
I am so much older than I can take.
And my affection, well it comes and goes
I need direction to perfection, no no no no.

Help me out
Yeah, you know you gotta help me out.
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah.

And when there's nowhere else to run
Is there room for one more son?

These changes ain't changing me
The cold-hearted boy I used to be.

Yeah, you know you gotta help me out
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah
You're gonna bring yourself down
Yeah, you're gonna bring yourself down
Yeah, you're gonna bring yourself down

I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.

I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.

Yeah, you know you gotta help me out
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah.
You're gonna bring yourself down, yeah.
You're gonna bring yourself down
Yeah, oh don't you put me on the blackburner
Yeah, you're gonna bring yourself down
Yeah, you're gonna bring yourself down

Over and out, last call for sin
While everyone's lost, the battle is won
With all these things that I've done.

All these things that I've done.

If you can hold on,
If you can hold on...

All These Things That I've Done - The Killers from the album "Hot Fuss"

Quality Control

So, the sun is out. I went outside. I deposited a cheque for $111.58 in the bank. I mailed my taxes.

My random playlist has played Straight Outta Compton, Swagger Like Us, Quality Control, and Paper Planes right in a row. I'm playing Mafia Wars.

"All I wanna do is (BANG BANG BANG BANG) and (KA-CHING) and take your money."

Today is Joe's last day of school for this semester. Happy one year of completed classes, Joey.

How soon is now?

I imagine doing all sorts of destructive behaviour these days. Every time Joe comes in from outside after smoking I feel envious that I am "not allowed" to smoke. I haven't smoked in over 18 months and I think about it more and more every day.

There's nothing that I would like more than to spend the rest of my life drinking, smoking and enjoying prescription medications. I believe the term is "Comfortably Numb".

Sadly, I don't have the budget for such an endeavour. Mayhaps I should start buying lottery tickets just to fund it?

Three words:

Re-prioritize
Redefine
Adapt

On one hand, I'm told that I need to do these things so I can be "happy".
On the other hand, I'm told that I have to go slowly, patiently and scale back my expectations or I'll never be "happy". Live in the now, she says.

NOW SUCKS. I don't want to live in this Now. I want to live in someone else's Now. I've been trying to live in some other Now for my entire fucking life, and now I'm told that I absolutely have no other fucking choice but to live in this one?

I give up. I can't live like this and I can't live the way that I want to. I will call the authorities that need calling tomorrow morning. I'll try to fake some sort of hope to save those around me from any sort of discomfort. Today is the last day I talk about anything negative in public.

Only sunshine, lollipops and rainbows for this woman... or she'll say nothing at all.

The Future

Lisa put forward these four questions a blog post ago and I'll answer them now:

What elements made up your life before diagnosis?

Most of what made up my life before my diagnosis was doing the prep work for having a completely different life in 5 or 6 years. Going to work everyday, keeping on top of bills and money, getting Joe through school so he could get a good job that allowed me to go and get the education I've always wanted. I had friends that I could do stuff with when I could afford to do stuff. I was a part of the political party system. I worked for the candidate until I got too sick. I am on the local riding association executive. I obsessively watched and read everything I could about politics. I obsessively read and watched everything I could about fashion, but not trends. Much of my life was about what I could do with myself, for myself, by myself. I didn't have many friends who were interested in doing what I liked doing, and that included my husband. For an extrovert, I seem to have surrounded myself with introverts. My life was not as I wanted it to be, but I had the skills, knowledge and know-how to get there with time and support. With MS, I've got the time and the support, but the skills and know-how are gone.

What have you done as a livelihood?

For the past 9 years I have been in events/fundraising or an executive/personal assistant for the most part... with an 18 month sojourn into the legal field. It's a busy life with little emotional or monetary payoff, but it's what I know how to do.

Are you unable to do the same thing for a living at this very moment?

No. The key to being able to work in jobs like this is that you are capable of showing up everyday, with all your physical and mental capabilities, looking good and fresh and bright eyed, and being able to work anything from 8 hours to 12 hours without hesitation. That's not an everyday thing, but it happens more than you'd think. I still know how to do the job, I'm just not able to commit to a job like that because of the unknown future MS has given me.

And what had you pictured as your future?

I wanted a fabulous life all about me. When Joe and I decided to get married, it became all about us, and thus less personally fabulous because Joe doesn't like or enjoy many of the things I find fabulous. Since I have no real talents or interests, being fabulous is something that I've aspired to since the first time the "girls" dressed me up in their drag costumes and I passed as a boy in a dress at a gay bar. MS has stolen that from me, too.

MS has taught me that I am a really awful human being, and I'm not sure that I am at all interested in changing that. I'm extremely self-centered and selfish. I hate most people. I cannot tolerate people who are gullible, unquestioning or simple and people with no sense of irony or intellectual curiosity. I know that I am smarter than most people and really try to keep myself away from people who can't keep up or can't think abstractly. I hate children and old people I am not related to.

My social worker is sending me to the MS clinic psychiatrist, and I know that if I tell him the truth I'll be on anti-psychotics by the end of the session. She seems to think that I need to find "my soul" and re-prioritize my life.

I know where my soul is. It's in England. I sold my soul to Noel Taylor back in the summer of 2003 because I wasn't using it and I'm not sure that he's interested in giving it back. I don't believe in the soul. I don't believe that there's any part of me that's eternal, nor do I want there to be.

I have no priorities beyond making myself comfortable. In 80 or 90 years everyone who's ever known me will be dead so what I do now matters not, since I'm not curing polio or inventing the internet. I believe that the point of life is just pain management. You just work hard enough to make life as easy to deal with as possible. With MS my ability to manage my own pain is regularly defeated by my lack of money, stamina and cognitive abilities.

I'm not interested in embracing my life if there's no chance it won't end up fabulously. I have no talents and no interests beyond fulfilling my own need for comfort. Joe and I tried to talk about this last night and what it came down to was that he doesn't like me as a person very much and we're less compatible than he thought we were in the beginning. I am not interested in people and I'm less interesting than I think I am.

I'm supposed to find meaning from all this? I am supposed to find my "authentic self" or some such in all of this? I'm quite obviously failing as a human being and being physically disabled just compounds my worthlessness.

I've known for a long time that I'm just not a nice person. I guess I've just got what I deserve.

Music: Response

You love this town 
Even if that doesn't ring true 
You've been all over 
And it's been all over you 

I am not generally a fan of U2's later work, but Beautiful Day just bounces with hopefulness. This particular verse also reflects my feelings about Vancouver.

I will not pretend
I will not put on a smile
I will not say I'm all right for you
When all I wanted was to be good
To do everything in truth
To do everything in truth

I am more familiar with Rufus' work, but this verse from Martha Wainwright's Bloody Mother Fucking Asshole kicked me in the gut. This song is three chords and the truth.

You are the dancing queen, young and sweet, only seventeen
Dancing queen, feel the beat from the tambourine
You can dance, you can jive, having the time of your life
See that girl, watch that scene, digging the dancing queen

Disco is just happy, joyful and makes me want to dance. ABBA are the Royal Court of Disco, and Dancing Queen is their anthem.

If you're not dancing, then you're dead.

Just how much fun are Marilyn Manson tunes, really? If I were a club goer, I'd do the jitterbug to this tune. But I'm not and I can't so I'll just use this a walking tune. Fun! Doll-Dagga-Buzz-Buzz-Ziggity-Zag!

And we'll all float on alright
Already we'll all float on alright.
Don't worry even if things end up a bit to heavy
We'll all float on alright

Life has shit happen, but it'll all work out. This is something I'm really impatient about and this helps me remember that. Thanks, Modest Mouse!

I've had enough of hiding underneath my covers
I'm done with all that poop that brings me down

I've taken to singing this song *Really LOUD* whilst Joe is at school. I'd never heard of Cloud Cult before this project but I'm really glad I have heard of them now. I will laugh through hurricanes and fire, and I will link to a youTube video of the song live at some club so you can get on board with the Cloud Cult. It takes a minute of instrumental-ing to get going. And yes they do use the word *poop*.

I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed

This is a happy little song. I also like Jason Mraz's use of hats as an affectation. So this song gets a thumbs up. It would get two, but he mentions ear nibbling in the song and I think that's gross.

Hey, I wanna drive the Zamboni
Hey, I wanna drive the Zamboni

I love corny hockey songs; they're a secret vice of mine. Since no one knows about my love of this particular genre, I'm shocked that I know anyone else who does.

Being like you are
Well this is something else, who would comprehend?
But some that do, lay claim
Divine purpose blesses them
That's not what I believe, and it doesn't matter anyway

This song reminds me that I can't let this disease change me, swallow me up whole and become the thing that defines the way I interact with the world. It's a pretty, pretty song that empowers me to keep moving. Illusion by VNV Nation regularly makes me tear up, so no listening to it on public transit.

Feelin pretty good and that's the truth
It's neither drink nor drug induced
No I'm just doin alright

And it's a great day to be alive
I know the sun's still shinin when I close my eyes
There's some hard times in the neigborhood
But why can't every day be just this good?

I generally have a *hate-hate* relationship with country music, but this song came from an old friend of my sister's. She listened to this song a lot while her husband was deployed in Afghanistan, and if it got her through that, then I can sing along to it (again, while Joe's not home) and get something out of that good vibe. That's kind of the point of this exercise; to get a lesson in inspiration, and where it comes from, from my friends.

The next song is an instrumental, so I've got no lyrical content.

Linus and Lucy is a happy, happy song that makes me want to dance like the kids in the Peanuts which is where I'm convinced I would've got some of my best dancefloor moves.

Your hand won't write, not tonight,
But your mind may wander.
Into those deep lagoons that you know.

Sarah Harmer's Lodestar reminds me of summer nights spent near places like Chemong Lake, the Madawaska River, Centennial Lake, Little Lake and the Otonabee River. I've never lived far from a body of water, and I think it's because of these places. I can live with or without the mountains, but I think it's about time to go beach glass hunting again.

I will not fail nor falter, I shall succeed
My perception is altered, I do believe
Faith is so strong now nothing shall bar my way
Firm conviction is no fiction
This is my day

YAY! This one is on the walking list. It makes me want to march. It makes me want to move, move, move any mountain. Of laundry. Or mountains that were previously molehills.

Can't you see, life's easy
If you consider things
From another point of view

This is a groovy wee tune that I sing as well. This song immediately popped into mind as my mental health professional and I were talking about expectations and the future. It's a toe tapper, and has a great beat for walking to as well.

Where's your head at?
Where's your head at?
Where's your head at?
Change my pitch up, smack my bitch up.
Where's your head at? Where's your head at?
Change my pitch up, smack my bitch up.
Where's your head at? Where's your head at?

Ima HUGE fan of mashups. I can't even begin to explain how much joy I have personally enjoyed this song. I haven't heard Where's Your Head At? since 2002 or 2003, and Smack My Bitch Up is a club staple of the late 1990s. This song gets me moving, and when you move as little and as awkwardly as I do, any little bit helps.

Les sanglots longs
des violons
de l’automne
blessent mon coeur .
D’une langueur monotone
tout suffocant
et blême. Quand
sonne l’heure
je me souviens
des jours anciens et je pleure.

The best I could do with translation was by using my Grades 1 through 10 French education, knowledge of Quebec licence plate slogans, and freetranslation.com. This is the best I could come up with.

"The long cries (or sobs, not sure) of the violins of the fall injure my heart
A monotonous languor all suffocating and pale
When the hour rings I remember old days and I cry."

The song sounds a bit happier than it is, but being reminded that I could still probably learn French is a good one. And I love trumpet. Totally dig trumpet. It's way less "honky" than sax.

Tonight I'll dream while in my bed
when silly thoughts go through my head
about the bugs and alphabet
When I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we are going to be friends.
Yes I can tell that we are gonna be friends.

This is song is so innocent and sweet. That's all.

One, two, three, four, five, six, nine, or ten
Money can't buy you back the love that you had then
One, two, three, four, five, six, nine, or ten
Money can't buy you back the love that you had then

This is a happy song about a depressing situation. It reminds that there's nothing I can do to change the past, things are going to change no matter what, and in the end all you can do is put on a purple sequined jumpsuit, dance and take a bow.

I'd just like to thank the friends who helped with this. It taught me a lot about the people I know. I'm not particularly close to the vast majority of people who responded, I had a couple of people punk out on me and were kind of mean about it, and it taught me to find find inspiration in the works of others.

My social worker is sending me to the MS clinic psychiatrist to figure out sleep, depression, and getting a referral to a therapist who can deal with me. It's funny that cognitive behavioural therapists in this town don't deal with people with chronic illnesses. That's too bad because CBT is the only type of therapy I have any sort of confidence in. I'm not sure that therapy can help this time, but I am willing to investigate the possibility.

I've almost completed my Level 1 - Enforcer level in Mafia Wars. YAY.

And we'll all float on alright...