Friday, July 31, 2009

Getting closer.

I have been warned by 5 people with MS, the relapse nurse & the clinic social worker that I am setting myself up for a huge fall.

The heatwave broke today. While it's still quite warm and sunny, it is a good temp in that I can still keep moving. I'm feeling a little more confident in being able to get out and do things that I used to do.

One of those things is going to the Pride parade. I marched last year with the group from Vision Vancouver in advance of the municipal elections but this year I just can't trust that I would be able to make it through the very long route on foot.

My friend Cristin is the coordinator of a float and I will be on it. With my new tiara, pink umbrella and fabulous hair, I will wave to the estimated half a million people who are going to line the streets of Vancouver's West End. I don't know if she's got stuff to throw, but I will throw it if she does.

This brings me to the set up for let down.

I'm trying to get my life back by pretty much ignoring the stupidest of my symptoms (listening only to nerve fatigue symptoms, really) and getting on with it as if I'm not sick.

I've been told that this is just holding back the grieving process. If I get content in my old life I will have to start all over when I crash.

Since no one can tell me when I will crash I'm just going to do what I know. And what I know is that I am the kind of person who rides floats in the Pride parade wearing a tiara, waving and throwing whatever (Plz let it be condoms) and shouting "Happy Pride" to everyone. I even made a special playlist of songs on my iPod to celebrate the occasion. I am aware that I have nerve fatigue issues with my left leg so I'm not trying to walk the route. I am aware that too much heat is not good for me, but the weather is supposed to be cooler over the weekend and that's why I have an umbrella and light coloured, comfortable clothing. It isn't as though I'm acting like I don't have any issues.

I gots my hair did for the weekend because I am the kind of person who gets their hair did regularly. Gone are the creeping greys that have been driving me bonkers since I started realizing I looked like shit. Having only one haircut since November before today was not my norm.

These are things that I like, even love, to do. While many of my friends don't really get it (especially here in Vancouver) I feel better about myself, the direction of my life and my prospects if I've just got it a little together on the outside.

Mayhaps that's the Cognitive Behaviour Therapy that I've spent a fortune on over the years talking, but it is real and true for me.

On a bad day there's always lipstick.

Wednesday, July 29, 2009

The Forecast:

"...tomorrow calls for a high of "Holy Fuck It's Hot" and a low of "Oh My God"."

I am still mobile, which gives me some idea that my heat sensitivity isn't as bad as it used to be.

I applied for the first job I think I would be able to do, but the close date isn't until the end of next month, so I don't think I'll hear about it for a while.

I got my appointment for the job developer. Since it's a long weekend coming up and a short week next week I can't get in until Monday, Aug 10.

I have been living off of fruit smoothies, sandwiches and popsicles. The smoothies are GOOOD.

I think I've lost some weight, but because I refuse to own a scale I just have to judge by the fit of my clothes.

I've done a lot of stitching this week and it's kind of the perfect thing to do while its hot. Requires little movement.

Blueberries fresh from the field are awesome with vanilla yogurt.

Please, make this weather go away.

Monday, July 27, 2009

Don't start no shit, there'll be no shit.

The title of this post is today's yoga mantra. It is interchangeable with "Oh shit, here we go!" Tomorrow's may just be "If you ain't got no money, take your broke ass home." But we'll see.

Today I spent 50 minutes trying to hash out this idea I had late last night that wasn't gone when I woke up so I had to write it down. It was like a song from the 90s, a documentary I saw in 2006 and memories of communal living in my teens & 20s all mashed together and won't stop.

Is it normal to have Justin Long's voice in my head as I write? He's Mac. I'm PC. The idea has clearly made me bonkers.

I sent my first two x-stitched fridge magnets today! I'll post a photo of both of them once the recipients get them in the mail.

Tomorrow is my grandma's 85th birthday. I already wrote about how I had to call her and yell at her and make her cry. Since that call she's been doing, not trying. She's going to get herself better and I will get to see her again.

Today's Joe's last history class, and with the possible exception of last summer's adventures in biology, I've never seen him so happy to see the back of that class. I've been informed that I don't have a husband unless summoned from August 1 to 10. If anyone wants to entertain me during this time, I'd appreciate it.

I should hear from the employment agency today or tomorrow so going that will use up some of my time.

So many people have told me not to stress about finding a job but what these people don't seem to understand is that *not* having a job is my *biggest* stressor. I'm not a workaholic, but everything I like to do costs money, and if I don't have an income I can't have any joy. I'm also the only one who was making money since Joe went back to school before I got sick.

In short No job = No life.

I've been told that I am not to go back to my previous line of work because its too stressful, I have no idea how that his going to work. I have nothing to do, day in and day out, and I can't afford to do most of what I like to do. I can't type or stitch all day because my hands cramp up. I'm reading what I've got available, but since I don't read any fiction other than Michael Slade novels I'm running out of books to re-read even. THOUGH! I didn't know he had a new book out last summer! I'm going to have to go get that one and very, very soon.

I'm kind of uncoordinated today. I'm finding the humidity far more difficult to deal with than when it's just hot.

I'm hungry.

Saturday, July 25, 2009

Float On

I've been heading out a lot more with my collapsible cane collapsed in my purse. I'm walking better at short distances, my skin is starting to behave, and next week I'm going to get my hair did for the first time since November. I went to a political function today and it was strange to be looking close to normal.

I hereby ban the use of the word "grassroots".

*stamps foot*

Vancouver maybe gets one thunderstorm a year, and tonight's is a DOOZY. Bolts of lightning. Rolling thunder. Gun metal grey sky. It's awesome-sauce.

Instead of sleepy pills I am going to open this bottle of wine, convince my husband that math can wait until the morning, and find a movie to watch.

My paperwork is in the employment agency and I'll be getting a call on Monday or Tuesday to get my date to meet the job developer.

I made my grandma cry yesterday, but she totally deserved it. Yesterday and today she started with baby steps to start caring for herself because I told her she was acting like she never wanted to see me again. I also told her that if she died before I got back east, it would be her own fault.

I also told her that if I wasn't allowed to give up, she wasn't. We'll see if it sticks. I'm hopeful but not optimistic.

Thursday, July 23, 2009

Stuff and things.

Thanks to Cake Wrecks for the photo.

So, I got my new neurologist today, and it's a woman! And she is fun and a recent graduate and is supervised by this other woman who wears 3" stilettos and has a blonde Bettie Page haircut. I have the two most fabulous women in the neurology dept as my doctors! YAY!

Funny thing happened as my previous doctor was leaving the country...

I'm trying to get into this employment resource agency for people with disabilities and it requires a basic assessment of my condition and approval to work. Yesterday, in the hour before he finished at the MS Clinic he filled out my forms and had them faxed.

The agency called me to tell me that my doctor hadn't approved my return to work. This surprised me because he wrote a letter to EI saying that I was ready for regular benefits about two months ago.

She then informed me that I've had MS for 6 years, I am anorexic, on anti-psychotics, have no mobility issues, but I can't read, write or talk properly.

This is all very much news to me. I think he may have got me mixed up with another patient. So as a result I got to meet my new doctor at the clinic today. We filled out the forms properly and I had the office staff at the clinic re-fax it.

I'm still weirded out by his confusion in my paperwork, but I guess that it doesn't matter now. He's gone back to Germany, and I have a bright, shiny new neurologist!

This means that I'll have a reason to leave the house soon. Working with a job developer and employment counsellor will be good.

I changed up my Wellbutrin dose to both pills at 9 AM and I'm sleeping better. No more than 6 hours at a time, but that's definitely better than the 3 or 4 I was getting before.

Additionally, I've been following the craptastic Republican stupidity about how the US Congress' health care reform bills are "Canadian-style" health care.

IT is NOT even close. In fact, it is the kind of care that Canadians have been fighting against for about 10 15 years. Two-tier is a bad idea, but I guess in the case of Americans beggars can't be choosers, right?

The Canadian system isn't perfect, but I've never waited for anything I've ever needed. The system is run on triage and the sickest get service first. I have MS and I've had an MRI bumped because someone with a brain tumor or something needed it more than I did. I'm cool with that, because I know that person was sicker than me and didn't purchase his/her way to the front of the line. I got in a few days later.

If I had to pay for every health service I've received in the past 10 months I would be declaring bankruptcy. I had no "employer" insurance with my last job. I have had 3 MRIs, 2 MUGA scans, an EKG, an EEG, seen 5 specialists, had 4 rounds of a chemotherapy drug, three bags of steroids and have used the services of the relapse nurse, social worker and physiotherapist at the clinic as well as two visits to my family doctor to get some of the side effects dealt with. I either wouldn't have got these tests/treatments/supports or I'd be in debt up to my ancestors ears as an uninsured person in the US. If I had even the most basic of coverage in the US, I'd be swamped with bills.

I lost my job and the ability to work because of MS. I'd be destitute if we were in the US, and every DAY I am grateful that Joe moved here instead of me moving there.

Single payer insurance is the way to go, but I doubt that the culture of the US will allow them to get there. The system is too race and class based for white suburban people to allow poor people get the same care they do. The place is so Calvinist it makes my head spin.

I am sure there's more, but this is long and offensive enough.

Tuesday, July 21, 2009

Pimp my ride.

I got this totally retro stationary bike that my friend Sam found abandoned as garbage at his building.

It works good, it just needs some lovin'.

I'm going to repaint it and then add a new seat and some handlebar streamers. I'd add shinies to the spokes, but no one seems to carry them anymore. That's sad.

I have been outside for a while during each of the past two days, and the weather's been around 30C (86F) both days. I haven't lost my legs but I did walk too much yesterday and over-extended my knee, so I went easy today.

In looking back over my symptom tracking, I realize that this new tolerance for heat is related to one or two things. 1. The mitoxantrone has worked its magic and I'm not as demyelinated as I was and/or 2. The large doses of Vitamin D I've been taking for the past month are working to ease my symptoms. On the recommendation of my neuro and based on some clinical research coming out of Ontario, it seems that high doses of vitamin D seem to help with symptoms. I've been taking 2400 IU of vitamin D daily for a month and this is where I am.

I'm frustrated at the progress of my employment prospects and the help I've been offered. I want something to do so badly, I've got myself hooked up in the political apparatus of party politics.

Jumpin' Jeebus on a pogo stick... I need help.

Sunday, July 19, 2009

I can't tell you what I was doing...

but for about an hour last night I didn't hate my life, I felt normal & not sick.

I have also sent out thank you cards to everyone I had a mailing address for who contributed to my MS Birthday Wish using the Causes application on Facebook.

If I don't have your mailing address (Katherine, Laurie, Erin, and Gina, I'm looking at you) please send it to me and I will send you a card. Along with the $20 my mum sent in cash, we raised $260 for the MS Society of Canada.

Your support and love means the world to me.

Friday, July 17, 2009

More discoveries.

So I've figured out that it's not the heat that kills me. It's heat concentrated on my head, neck and back. If I stay in the shade or otherwise keep the sun off me for extended periods of time I don't lose any function whatsoever.

I also did some mitigation before leaving the house. I soaked my head in cold water and as I was doing my hair and makeup I had one of those beanbag kinda cold packs around my neck, and then I went outside with a white shirt on, a white hat and a pink umbrella to create shade wherever I was. I kept to the shady side of the street whenever possible and if I was just going to be out in the sun for more than a few minutes I used the umbrella.

It all worked, and I made it downtown and home on quite a hot day without anything going anymore wonky than it was when I got up this morning.

I really need a stationary bike. I can tell I'm completely out of shape and weak from inactivity more so than from the MS. I just need to figure out how to pay for it.

The MS Society only has funding to provide mobility aids not "prevention" or "rehabilitation" equipment which sucks. I can claim the damn thing on my income taxes but that doesn't happen until next year. I just don't want to be sick anymore and I think that trying to get something that's *me* back is important for me to get there.

I kind of had a run in with the social worker from the MS clinic. She thinks that I will be miserable for the rest of my life if I can't accept that I will always have MS symptoms. I said to her that I won't be happy until I don't have MS anymore. She said that that is unrealistic and I need to find some way of accepting that I may never have feeling in my finger tips again. I may always have a funny walk. I will never be able to wear heels again.

I know this, but I don't want to accept it. I don't want to be happy in spite of it. I don't want this lame excuse for a life to simply be "good enough" for someone as damaged as me. I don't want going out for lunch to be a major accomplishment like I'm four and was able to dress myself for the first time. This life isn't what I want but I am willing to try to work around and accommodate what I need to to get by... but don't you for one second try to tell me that I've got to be happy to be alive through it.

I love my husband, family and friends more than anything and right now it is their wishes that keep me alive.

I was in a state of disorder and reconsideration before I got sick and now this just makes trying to make something of my life just that much more pointless. Joe doesn't think I'll ever work again. I think I can but the job I want and can do doesn't seem to exist. I don't know what my friends and family think of my future, but they can't think much less of it than I do.

Joe is enrolled for his fifth semester of post-secondary education. He's declared his major and was given a pen from the Political Science department of Simon Fraser University to mark the occasion. I'm so happy for him because he's moving ahead. I'm so proud of him because he's really made the most of his immigrant experience by taking advantage of the opportunities he has here to get skills and knowledge he didn't have the money to get in the US. I guess its a good thing that we're less litigious here in Canada or things might be different.

I've been told not to bother setting any goals for my own future until I'm more stable. Since I was pretty unstable before I got sick, I'm not sure I have that kind of time to wait. I have to find a job, because the EI information I'm getting is so incredibly confusing. I am so tired of having nothing to do, no where to go, and no reason to get up in the morning but checking my crops at FarmTown on Facebook.

I just want something to do. I don't know what, but I just want something to do. And I hope that they don't put me through one of those "career discovery" programs again because I'm not really interested in becoming more suicidal than I already am. I don't need a reminder that I never lived up to my potential and have no education or skills that allow me to do anything I am remotely interested in doing. Not that I'm interested in much, according to my career assessment.


And now I'm told that Walter Cronkite is dead. That's sad.

Mum, if you are reading this... I'm sorry.

Thursday, July 16, 2009


I found out that my neurologist is moving back to Germany to do research only. He apparently doesn't believe in letting his patients know and we were to be informed when we called in to make appointments.

I have my first physio appointment on Aug. 6.

I have been given another 5 months of Wellbutrin and told that the best we can hope from the drugs is more energy and I won't kill myself, but the depression is likely to last until I reach my "level of acceptance" of my disease.

Given that I'm not likely to accept that, I imagine I'll be on Wellbutrin til hell freezes over.

The heat of the past two days has had me housebound again. This shit is getting OLD.

Other than that I just feel wonky. I don't know how else to explain it.

I've fired up my political blog again. My friend Demitri conned me into rejoining The Party.

I may just live to regret this.

Sunday, July 12, 2009

7 months.

Why does it seem like I've been dealing with MS crap forever, but it's only been 7 months?

Last night brought a lot of old friends to my door to help celebrate my birthday. It was lovely to see Matt, Paul, Korry, Cristin, Jessica and Dmitri again after so long and it was also great to meet Ray for the first time as well.

However, I was very conscious of the fact that I wasn't at the top of my game. I wasn't ready when people arrived. I wasn't comfortable in my clothes, I wasn't happy with my hair, and I was really uneasy about not wearing makeup in a social setting. So, therefore, there are no photos of my at my birthday party. I am much more accepting of that than if there were photos for me to obsess over and critique.

I'm not happy or comfortable in my own skin. Every hour brings yet another reminder that my body has betrayed me and I will never be capable of doing what I once did.

I am 12 hours and 15 minutes away from turning 35 and I have accomplished nothing and done nothing in my life that I am proud of.

My only plans for tomorrow are spending an hour with my psychiatrist.

Saturday, July 11, 2009

If you don't have anything nice to say...

don't say anything at all.

Spent most of yesterday dealing with a stabbing pain in both my eyes.

That *rawked*

Wednesday, July 8, 2009

I had a catchy title for this post...

but now I can't remember it.

Good news: I have been given the green light to start colouring my hair again, provided I wait until 3 weeks after this latest treatment and don't do it in the three weeks on either side of my next one. I can totally live with that.

I have sleeping pills that cause drowsiness. That's just awesome.

Adam and Jeanine brought over wine last night. Best. sleep. I've had in weeks.

Bad news: The spasticity in my left calf is getting worse and affecting my balance and making me look like the Minister of Silly Walks.

I'm pretty sure that the Wellbutrin isn't working, but I've now been told that it will be 6 to 8 weeks before I notice anything.

I haven't lost a pound in two months even though I've been eating less, on Wellbutrin and trying to move around more.

I am waiting for my doctor to fill out some forms for this job help agency and I fear that could take freakin For. Ever. The nurse won't call me back either.

The MS Society only has equipment funding for mobility aids, not rehabilitation and prevention equipment. So, I've got to find the money to get the damn stationary bike before my fatness takes over the house.

I am overdue more than 6 months on getting my annual poke and prod because you can't get accurate results when you're on chemotherapy drugs. August 12! Be there or be somewhere else. YAY!

I think that's it.

Monday, July 6, 2009

Sell your crazy somewhere else.

To the fundy who commented on an early post of mine:

I do not believe in god, therefore your assertion that my MS was caused by His Wrath does not fit into my world view. Also, your position that if I don't "come to Jesus" I will burn for eternity in a lake of fire seems unhelpful to your cause. Threats of eternal damnation are unlikely to attract me to your god. I'm not interested in attaching myself to an omnipotent, bearded wonder who's that mean. You catch more flies with honey, etc. etc.

Though, when it comes to religion, you often catch more flies with bullshit than you do with honey.

To the person with MS who commented on an earlier post of mine:

Any sentence that begins with the words "You gotta" or "You've got to" is going to be totally ignored. You don't live in my body and my experience with the disease is very different than yours is.

I have had nothing but unpleasant interactions with human beings today. I've deleted all comments by these people and will not accept comments from them in the future.

I don't think the Wellbutrin is working.

Sunday, July 5, 2009


I haz it.

For someone with a disease who's primary life destroying property is fatigue, I'd like to have some of that, thanks.

I don't drink more than one coffee a day and never after noon. I avoid all caffeine after 3 PM, including chocolate and soft drinks.

I just want to fall asleep at a good time. That's it.

Friday, July 3, 2009


Today I was waiting at the 99B stop at Main & Broadway. In the shelter was a woman, a man and a stroller full of happy, bouncy 6-ish month old baby. The baby was working on the three noises it knew how to make and being really happy. I turned to the woman and said, "You have a beautiful baby. What's your child's name?"

She replied quietly, "Ruth".

The man who was sitting on the other side of me said excitedly, "And she was born in Canada!"

I smiled at him and asked where they were from.

"We came here as refugees from the Sudan last year."

I welcomed him to Canada and told him that it was wonderful that they could start their lives over here, though I'm sure it wasn't easy.

He grinned wider.

"I am going to be a Canadian dad. She's going to play baseball and hockey. She's going to learn to dance and sing. She's going to go to school and become very smart." His wife looked a little embarrassed, but I smiled at her too. She smiled back.

Two days after Canada Day I am struck by what kind of hell people go through to get to the new world and the hope and promise of the next generation is why they do it.

To the Sudanese man who's going to be a Canadian dad, thank you for being a part of my Canada. I wish nothing more than sports, dancing, singing and education for your beautiful daughter.

She also rocks that afro like no one's business. Keep it natural for as long as she'll have it.

Thursday, July 2, 2009


Another day of taking it easy after having my treatment. I did manage to get a couple loads of laundry done though.

It's a good thing that I wasn't trying to get out and about town today because it was much too hot for me to be running around. I can't go out in anything over 26 degrees and today it was 30 in East Van. Tomorrow it's supposed to be the same, but I hope that my appointment before noon will get me there and back before the hottest part of the day.

My appointment is with a job support agency that says it specializes in helping people with disabilities find meaningful employment. I'll be the judge of that. I just hope that it isn't as frustrating and enraging as the last time I tried to get into this.

I think that the Wellbutrin is making my insomnia worse. That's not cool.

I am so angry and I can't even specifically name why.

I need a stationary bike and it's the last thing I've ever wanted to own.

Wednesday, July 1, 2009


happy canada day
Happy Canada Day!

I have a solumedrol headache from mito treatment #4.

Next dose is October 15, 2009... the second anniversary of the day I quit smoking and my friend Erin's birthday.

I have a peer support person the MS Society gave me who calls me and has left the door open for me to call her. I don't know what to say to her, so I just let her ask the questions.

I have been given a prescription for a stationary bike. I don't get enough exercise and I will start to atrophy if I don't get 30 minutes of aerobic exercise 4 days a week. So I have to buy a stupid Human Hamster Wheel.

I'm sore and cranky from steroids and my left hand hurts from having a couple liters of fluid pushed into it today. So Ima go lay down and play solitaire on my iPod.