Saturday, May 30, 2009

An Exercise

I made a list of 100 Things I am Grateful For last night and over 50 of them are things that I just think are really cool or I like, (like my new Puma boots) but I'm not particularly "grateful" for them.

I think this is an example of why I am not a nice person.

I went to a party where I didn't know anyone and I was totally not myself. That's not cool, and a symptom of either Joe's paranoia of strangers rubbing off on me or a lack of self-confidence.

I'd hazard a guess that it's a bit of both.

I went out in the hot today and I didn't fail.

Thursday, May 28, 2009

So I'm about to put a kettle of water on to boil.

Joe walks up to the sink to get a glass of water, so I step aside to let him do that and put the kettle down on the counter.

Instead of filling up his glass, he grabs the kettle and shakes it. He looks at me and says, "Can you put this on? I need more tea."

He's got a case of the mathbrainz. Bad.

I have a case of the "This shit is getting OLD."

Another day of job search, another day of nothing to apply to. I have an appointment with the career planners for disabled people tomorrow. Yay me.

This shit is getting old.

Monday, May 25, 2009

Dogs are good.

I vacuumed my place and walked over to the dog park to see Donna & Jen hang out with their dogs, where I stood for the better part of an hour and walked home. I had some foot drop near to my house, but not really bad.

I'm not tired. Not in the least. Fatigue isn't my biggest problem, and none of my health care team want that to be true. I do get fatigue, but not every day. Not even most days. My biggest problem is that random limbs and cognitive functions just stop working without warning or reason. Since there's no drug or therapy that fixes that, I've been told that it isn't my biggest problem.

It can't be my biggest problem because it's the the thing that makes MS, MS. If I have a problem with having MS, I'm going to be unhappy, angry and unable to move forward with my life.

*I simply have to stop having a problem with having MS*

Then I will be happy, loving and moving forward.

I think I'm going to change MS clinics. They do less research at Burnaby, but maybe they won't be such condescending pricks.

Saturday, May 23, 2009

The Angry Woman's Guide to MS

Historiann has been writing/collecting a series of posts called Lessons for Girls. The first one, by Historiann herself, is about anger.
If I wish I had learned one lesson earlier in life, it’s this:  it’s okay to be angry, it’s okay to make other people angry, and anger can work for you.
I am angry. I am angry all of the time. And I'm really sick of people who think that angry is unnatural; that I should try to find the blessings in my life, that I should try to "get over it". People tell me they are concerned about how miserable I am, when it actually seems to mean that I am making life unpleasant for those around me.

If it weren't for my absolute rage, I'd still be in bed 10 to 15 hours a day, and I'd have lots of support for that inaction because no one wants to make me angry. I'm going to the psychiatrist because everyone thinks that not having a will to live and not having a meaning or reason for my life is a problem, even though I don't.

My anger will be medicated away to make other people comfortable.

Everything I wanted for my life is gone, yet everyone around me says that I should be grateful that I'm not dying. Or I should just "think positively" because things are going to be different in 6 months, or a year, or a decade.

My present anger isn't going to change the fact that things will be different at a later date. Please stop treating me like a child. If I had won the lottery on Wednesday, the first thing I would've done is found someone in Canada, the UK or the USA to give me a stem cell transplant to see if it would stop the MS. I don't care that it's dangerous or might have killed me. If I am not healthy and somewhat normal, I'm pretty sure that I don't want to live.

Everyone in my life seems to think that that attitude is crazy and that I'm depressed and borderline suicidal. I don't think that I am. I think that my reaction to the way MS has shown up in my life is perfectly rational, given the way I have always looked at life, living and death.

But I soldier on because I don't have any humane options for ending my life here in Canada. The options I have would also be very difficult on my family and I don't wish to burden them any more than I already have in my life.

So I'm not going to apologize for my anger. I am not going to back away from it, and when people start feeding me the bullshit that makes me the angriest, I will say so.


Thursday, May 21, 2009

Not good.

That's all I've got to say. I am not good. It was too hot for me to go outside today, and I'm having pain.

I hate my life. I can't stop crying. I hate my life.

Tuesday, May 19, 2009

*THEE* Soul Sucking Experience

I hate job hunting, and goodness knows I've done enough of it in my life time. I haven't had the best of luck with employment and I'm starting to figure out why.

I am woefully uneducated, yet highly skilled and capable, so I get *good* jobs when the economy is good and I'm the first one gone when the economy tanks. Everything I know how to do I've either learned myself or is something I'm just naturally inclined to do.

I've been job searching for days, and have yet to even apply for a job. Most of the places I'm looking are large corporations/government, and they all have these online application processes. As you go through, you have to tell them where you went to school, check the boxes to show that you have experience in X-Y-Z software, that you have A-B-C credential, blah, blah, blah and if you don't they reject your application, or you know that it won't screen through their word search and your application goes *poof*.

Now I know what you are thinking, "Don't apply at all those large corporations/government." But sadly, they're the only employers out there that offer benefits to the disabled, have employment equity hiring programs and are large enough to accommodate my potential and current disabilities.

I have an appointment with my friendly neighbourhood employment counsellor tomorrow afternoon because I am at a total loss as to what to do. The two disability employment resources agencies that I could find locally either 1) Won't call me back or 2) I don't qualify for it because I'm not on the provincial disability income assistance. The agency 1) currently has three open job postings at so I am guessing that it's probably a really disfunctional place. I'd apply for the job but I don't have employment counselling experience. I've been to enough of them that I could probably do it, but not having that community counselling diploma from the local community college is really holding me back.


I don't belong in the helping professions. That's clear.

I am really, really angry about all the trouble my diagnosis has brought. I don't want to look for a job! I don't want to have to give up all the stuff I wanted to do! I don't want this life. I don't. I don't. I don't.

One week and six days from now is the day I see the neuro-psychiatrist. Hopefully he has some pills that turn on my will to live and turn off my ability to care about my condition at the same time. If it comes from a doctor it's better for me than say booze and street available Vicoden.

That way, the soul sucking will hurt less.

Monday, May 18, 2009


I went from no-tech to ALL THE TECH.

The MS clinic said we should get cell phones because I/we might need to be in touch and I didn't have any way of doing that. I was living quite happily without a mobile device, but I suppose it was time to journey forward into the 21st century.

We could've paid $60-ish each a month for a basic phone/text package (US readers, don't be horrified, that's pretty normal for Canada) or we could pay $70-ish each a month for the full voice/data plan... so we both got BlackBerrys (ies?)

I got the black/pink BlackBerry Pearl flip. Joe got the Curve but hates the buttons, so he'll probably trade it in for the Pearl in the black/black option. (I got the last black/pink one, so he's SOL from that store.)

Problem is they screwed up my data plan, so all I have is voice and text and limited browsing, until they figure out what's wrong. I'm a tad pissy, because I wanted my Google calendar, email addresses and Remember the Milk sent to my phone, but NOOOOooooo... I have to wait until Rogers is damn good and ready to.

I'll give the number out when all this is good. Anyone outside of Vancouver can only have it if they promise to only call if they or a direct blood relative of mine is dead and you can't reach me at home.

Friday, May 15, 2009


My heart has no problems, and there is no evidence that I smoked for 20 years either.

Thus ends my first official week of job hunting.

Jobs applied for = 0
Connections made = 5
Connections who rejected me = 5

Next week brings calls to a couple of agencies that specialize in placing persons with disabilities, but maybe the therapist at the clinic is right...

I should lower my expectations, take whatever job I can get that offers LDT insurance, and stick it out until I'm too disabled to work again. It's not about what I might enjoy, be good at or even about the pay, but who's got the best package that will see me through the next MS attack.

Maybe that's all I've got to look forward to?

Wednesday, May 13, 2009


I had my half way through treatment heart scan today.

Tomorrow I meet with the cardiologist. If everything is still good, I'll get my next mito treament in July.

It was raining and totally cold today and that does little for my mood.

I'm always freezing or hot flashing. I rarely am just temperate. There's nothing I can do about this until after I see all the specialists who get a say in what kinds of drugs I am allowed to go on. It's more than frustrating.

I'm officially seeking employment. It sucks. Job hunting is as soul destroying as MS.

Monday, May 11, 2009

Symptom Log: Day 29

Last day of the symptom log. I know I have found it riveting. (/sarcasm)

Same as it has been for the last week or so. Stuff comes and goes... etc. etc. etc.

I've learned a lot about myself over the past month. First, I'm really, really fucking angry. All the time. 

Second, people don't like talking to, hanging out with, or associating themselves in any way with angry people.

Third, I'm am far too selfish and self-centred to give much of a shit about your problems until someone fixes mine.

Fourth, I have lowered my expecations for my life every year since I can remember and I'm now thinking that "Homeless baglady in a wheelchair" is a life option by the time I'm say 65 or 70.

Fifth... wait, no one wants to hear the fifth. My life has become one big "No. You can't do that." or "You don't understand. I can't do that."

I give up.

Sunday, May 10, 2009

Symptom Log: Day 27

I have these three symptoms all day, every day.
  • Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
  • Depression
  • Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
The footdrop, ataxia, neuralgia, anaesthesia, fatigue, anxiety, mood swings and Uhthoff's all come and go and are largely dependent on how well I manage my time and my energy. Like for instance, I can't go for my six block walk and do yoga in the same day, so I do each every second day.

Writing privately is proving to be much better for me (and let's face it, all of you) than blogging. I feel less judged, more able to manage my own response to my life, and I feel like I'm just better off not sharing what's really going on. Everytime I try to tell someone I actually know the truth about what is actually happening I get told that I just need to be positive, that I need to count my blessings, and that I need to just be grateful.

And that lets me know that the people who actually know me don't really know me at all. That makes me sad, because that includes the man I married and two or three of the people I consider closest to me.

Today's been a real day of evaluation for me because my grandfather died 10 years ago this very day. I miss him and there isn't a day that goes by that I don't wish that he and Joe had met.

My life was very, very different than it is now back then. I don't think that the people who know me now would even recognize the person I was back then. I'm glad that part of my life is over.

I miss my grandpa. I wish he were here.

Thursday, May 7, 2009

Symptom Log: Day 25

These are FMBs for the balance-impaired. No more high heels for me. They should arrive from the US in two weeks.

Yesterday I did manage to stand on my tip-toes to reach something up high and maintain it for a minute or so. That's something I haven't been able to do without falling over in about a year.

Things remain much as they were two days ago. Balance is good, stuff is generally working and coordinated - most of the time.

My family doctor went on 8 months maternity leave in September of last year so we ended up having a little catch-up appointment yesterday. She won't give me any drugs (good or uninteresting) until after I've been reassessed by the MS specialists (cardiologist, neuro-psychiatrist, neurologist, & physical therapist).


I've got the go-ahead to start looking for work as of May 25. Now I won't lose my Employment Insurance benefits, Joe can stay in school, and I won't violate my sponsorship agreement by going on social assistance.

I have NO idea who will hire me, what kind of job I am capable of doing, or what kind of employee I'll be given I can't work long hours and I can't get stressed out.

Income supports are great for people who've broken their leg and can't work, but they are not designed for people who will have ongoing, chronic illnesses. Sucks donut.

Tuesday, May 5, 2009

Symptom Log: Day 23

For the past several hours these have been my symptoms:
  • Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
  • Depression
  • Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)

That's it. I got the vacuuming done, cleaned the toilets, and wiped down my cupboard doors without any physical incidents at all, except for the ever-present numb hands.

(I realize that I have now cursed the rest of the day.)

I've been writing... a lot. One of the daily practices I have been doing for the past week or more is a short, one page exercise that can be knocked out in 10 to 15 minutes at the end of the day.


I pick a single adjective that describes the day I just finished and an adjective that will describe tomorrow.

Best Thing/Worst Thing

Exactly as advertised. I write down the best thing and worst thing about the day.

Win List

I write down everything that was good about the day. So far the longest list I've made has 10 things on it. The shortest, 3. This different than a gratitude list, because it just has to be FTW! Last week I listed the shrieking/crying child who fell down in front of me on the list because it was an excellent example of karma in action. The kid totally had it coming.

10 Things I Want Off My List by Tomorrow

Again, exactly as advertised. This is how I remind myself that I can step away from the computer/puzzle/project/writing and do something else. It's the time when I remind myself what to put on the shopping list, stuff to ask Joe or The Internet about. My list also reminds me to drink tea, look up an article, research something, stretch, do yoga, get my yoga pants hemmed and to read something every day. Some parts of my list repeat daily, some parts are brand new with each list.

I <3 Lists.

Sunday, May 3, 2009

Symptom Log: Day 21

Things still aren't any different. The footdrop, ataxia, neuralgia, and anaesthesia come and go, as does the fatigue, anxiety, mood swings and Uhthoff's. Though, I've figured out a trick to deal with shower related Uhthoff's. I keep my head out from under the water at all times, except when rinsing shampoo and I don't let the hot water run down my spine except to rinse.

As we've figured out most of my lesions are on my spine, not in my brain, this is an important discovery. Thankfully, it never gets really hot here in Vancouver and if I can get Joe to start letting go of having the heat on at night, I can really avoid the heat related problems.

All of my stress in mental, not physical, so I 'm hoping that there are some good drugs forthcoming from my collective of doctors. Instead of hating my life, maybe I can graduate to not caring about my life? That would be a refreshing change!

I don't know if Miss Erin and I are going to the craft show this afternoon, but I'm either ready to do that, or ready to do yoga.


Saturday, May 2, 2009

Symptom Log: Day 19

This post is about yesterday. I was just too tired to post it then.

  • 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
Things aren't any different. The footdrop, ataxia, neuralgia, and anaesthesia come and go, as does the fatigue, anxiety, mood swings and Uhthoff's.

I just keep trying to physically rehab myself into better health yet I get worse or no better. I don't know what the hell I am supposed to do other than just keep going. I'm trying to get my life back, because if I don't I will die. I'm not exaggerating here. I will die if I cannot take care of myself. No one has any idea how to get me back to where I was, so the only thing I know how to do is just keep going, keep doing and doing and doing.

I have to be ready, willing and able to look for work in EXACTLY 23 days. If I can't even walk around the block without falling apart, how is that going to be possible? I just have to keep pushing myself physically, because laying around hoping to think myself into a better life outcome isn't possible. I HAVE to be ready to work in 23 days. There is NO OTHER alternative.

There is no plan B. There's nothing else I can do but be ready, willing and able to get out there and find my next gig and not be so disabled that no one will hire me. How do I do that while waiting for a chemo drug to work? How do I do that while waiting for my brain to heal? Pushing myself to just keep doing is the only thing I know how to do. If it doesn't work, what is there?